Mid Transplant Update - A Terrible Mistake

Dearest Friends,

We have not posted an update since the first few days of Theofanis' second Stem Cell Transplant because our full attention has been directed towards our son's health and well being. On Day -5 of the transplant, which was his third day of high dose chemotherapy, we discovered that the doctors and hospital made a terrible, horrible, inexcusable mistake. The unthinkable happened. Theofanis was being given an incorrect dosage of chemotherapy. He was being overdosed.

He was being given chemotherapy per the protocol for a Single Stem Cell Transplant. The protocol for a Tandem Stem Cell Transplant (which he should have been getting) utilizes the same drugs as in a single transplant, but at lower dosages for each of the three drugs. If you recall, Theofanis is the first child at Comer to undergo a Tandem Stem Cell Transplant as part of the current Neuroblastoma clinical trial. When we, not the doctors, discovered that he was being overdosed, Theofanis already received too much of the one drug, Melphalan. The other two drugs were adjusted on the last day so that he cumulatively received the proper dosage. When the doctors and hospital took full responsibility for this unbelievable mistake, we were scared, angry, dismayed, appalled, etc., etc., etc.

We will soon post all the details of how we discovered that this mistake happened, how they corrected some of it, the short and long-term effects on Theofanis, and what the doctors and hospital are doing to regain our trust.

But, the most important thing right now is Theofanis' recovery. Theofanis did receive his "super cells" back on day Zero (last Wednesday). Like before, the actual stem cell rescue went well. His body seemed to once again welcome them back with open arms. However, the side-effects of the chemotherapy started sooner:  his pain is much more intense; his mucositis continues to worsen and he cannot swallow nor eat; he is having bad side effects such as itching from the pain medicine he is on; he has had nearly daily platelet transfusions; his heart rate shot up (but now is under control and confirmed by the many EKGs he's taken); and he has a urinary tract infection which is unbearable for him. (This is Theofanis' first ever infection since he started treament.) They are still monitoring the virus he has, too. Theofanis feels and looks miserable. He says he's having a tougher time now than during the first. It breaks our hearts to watch our son go through this. We so desperately wish it was us instead of him. 

Theofanis is right, this is more difficult than the first transplant. And, there is still no sign of his counts recovering. And the hope we had that Theofanis will be able to celebrate Christmas and his birthday with his mom, dad and sisters is slowly starting to fade.

But, we must and will continue to believe in miracles. And from the very begining our hearts told us that "With Love, Faith and Prayer He Will Win!" So, we ask that you all pray with us (and we know that you all pray for Theofanis every day) that his white blood cells and neutrophils suddenly appear during his next blood test and then sky-rocket from there.

And please pray with us that the mistake the doctors made will one day prove to be what cures him of his cancer. Because  WHY, WHY, WHY on the third day of chemo did Eleni feel that something was not right when nothing was different than the previous two days? What came over her to say, "Stop, something feels wrong." So, please God, our almighty and just God, please let it have been you, placing your hand upon us and telling us that Theofanis got the medicine he needed, and not one drop more.

With all our humble love and gratitude for your prayers,
Eleni and Kosta

Day -6 of Stem Cell Transplant #2

Theo's second day of high dose chemo (Day -6 of his Stem Cell Transplant) was quiet and uneventful. Theo spent most of the day making crafts, ornaments and playing monopoly with mom.  He played football on the Wii and ipad, too. He threw in a little TV, but not much. It also appears that Theo has decided to go on his winter school break a little early this year...another day of no homework.

Theo's chemotherapy on Day -6 started in the morning:

- Melphalan, 20 minute IV push (and administered with a red popscicle stick)

- Etoposide, 24 hour IV infusion

- Carboplatinum, 24 hour IV infusion

 

He kept up great with his mouth care throughout the day. His nausea was well under control, too.  His appetite slowed down and he often said, "I'm just not hungry." Though, he was open to having lasagne for dinner (Stouffer's frozen), but when he tasted it and realized it wasn't anything like mom's, he opted for some cereal instead.

He had visits from all the top docs, too. Dr. Cunningham came by to talk football and Dr. Cohn came by to once again affirm that she's proud of him for doing so great! She also told us that she's on-call on Christmas Day, and that if hes's still hospitalized, there's a chance that she may make an exception or two to let him celebrate his birthday with his sisters...possibly. That news made everyone smile!

p.s. Theofanis sneezed five times today.

Day -7 of Stem Cell Transplant #2

On Tuesday, December 6th, Theo began his stay in Room 637 for his second Stem Cell Transplant. And on Wednesday morning, his treatment began as planned for Day -7.

Theo is the first child at the University of Chicago to do a tandem stem cell transplant as part of the COG Neuroblastoma Clinical Trial ANBL0532. Researchers are trying to prove (or disprove) that two transplants are better than one. By participating in this clinical trial, Theo hopefully will be helping future children improve their chances of overcoming this cancer. And, most critically, we are all praying that this second transplant will permanently wipe out every single microscopic cancer cell that's lurking in him.

Theo woke up to a festive array of holiday decorations that is covering nearly every surface of his hospital room. He and his sisters (with mom and dad) set up his Christmas-inspired room with garland, snowflakes, santas, photos, and holiday/birthday messages from his friends and schoolmates from Pythagoras and Marion Jordan. There are even stacks of handmade cards filled with good wishes from kids Theo has never met before...kids from his cousin Sofia's school, Jay Stream Middle School, and kids from Saint Spyridon, a Greek Orthodox Church in Palos Heights who also sponsored a fundraiser for Theofanis. He has a handmade winter blanket given to him by his classmate Reagan, too. Theo's hospital room would not be complete without Legos...a Star Wars Advent Calendar is his count down to Christmas and his birthday. 

Oh, and of course, there's his Christmas Tree adorned with multi-colored lights, holiday and sports-themed ornaments, and topped with a Blue Jay, Marion Jordan's mascot, which was given to him by Mrs. Grosch. Like before, the staff at Comer told him that he has the best room in the hospital!

For a tour of Theo's hospital room, click on the YouTube link: http://youtu.be/wfOr1YrPoZA

In the morning, the nurses and doctors started to filter in and out of the room with the day's medicinal plan. Overnight blood work came back looking good. His CAT scans from the previous week looked good, too. And, with news of good test results that confirmed normal kidney function (negating a slight scare the Yianas' had earlier in the week), Theo's body was ready for the high dose chemo and stem cell rescue. A small surprise, though, put the staff on alert. Theo tested positive for the rotovirus, also known as the common cold. Although he has no symptoms, a nasal swab confirmed that he has a colonized virus, which may or may not turn into a full-blown cold. With the known side-effects he'll be facing post transplant, Kosta and Eleni are praying he won't have to also deal with congestion, cough and a runny nose, nor be faced with the risk of pneumonia.

Theo was full of energy when the medicine was hung a little after 10 am. He had already started his mouth care, finished his breakfast that he made himself, and even tackled a Lego set given to him by a little girl Ryan in his class.  Dad stopped by to drop off some important items that were forgotten at home (i.e. coffee) and found Theo sucking on an orange popsicle. "It's medicine," Theo told him. Theo had to keep his mouth cold for an hour before chemo and for the 20 minutes of actual infusion of Melphalan. Apparently, swelling of the mouth can begin instantly. Because Theo can't have non-purified ice, he was given the choice of chewing on frozen gummy bears or popsicles. He tried the gummy bears but opted for the popsicles. After his 5th popsicle stick, he "complained" he couldn't eat any more!

Theo's chemotherapy on Day -7 were:

- Melphalan, 20 minute IV push

- Etoposide, 24 hour IV infusion

- Carboplatinum, 24 hour IV infusion

At about 3 pm, Theo announced he was bored. Although he completed a full lego set, made a snowman on skis with Jackie, the art therapist, watched TV, and played with games, he felt that he had nothing to do. His energy changed. Not even the offer to do homework livened him up.  Child Life came running in with a Wii system, board games and movies to help cheer him up. He snacked throughout the day and ate decently, too. But, it was obvious that tiredness was setting in. And that's when it became ever apparent that the chemo was circulating through his body and it was affecting him. He complained that his central line and the dressing around it hurt, so much that he was in tears. And, he also had an unexplainable splotchy rash instantly appear and then disappear on his face and head. The nurse who witnessed it described it similar to a hot flash. The super cells Theo got back during Transplant #1 are not liking the chemo. And you can't blame them, either.

p.s. Theo sneezed six times today. Please, let's all pray he doesn't get a cold.

The Weeks Post Transplant #1

The dark days of transplant led to brighter days that once again proved how incredible this child is!

To all our wonderful friends and followers of Theofanis’ blog, we thank you for your continued support and prayers. We apologize for not having posted updates in several weeks, but be assured, Theofanis is doing great! His Super Cells are as incredible as Theo himself! Though, the ups and downs that we faced have led us to moments of complete emotional and physical exhaustion. Nearly seven months into this battle against cancer, we have learned to allow ourselves to seek rest and sleep. In other words, we crashed. –Eleni and Kosta

Post transplant: Day +1 through Day +7
They were difficult, dark, and frightening days. Kosta and Eleni felt helpless. Neutropenia set in and Theofanis spiked a fever. The doctors started the antibiotics, the antivirals, the antifungals, the anti-nauseas, the morphine, antiseptics, the colase, the lotions for his inflamed skin, the rinses for his blistering mouth, the stomach soothers for his shedding GI tract. The TPN (intravenous nutrition) was hung since he no longer could eat. The only thing that seemed to bring him comfort was “Mr. Thirsty” (coined by his dentist, Theio Pete) which he used to suction the saliva out of his mouth. His face swelled, his mouth was full of sores, his throat was flaming, his skin was rashed. His skin also itched from the morphine and his scratching didn’t stop until a new pain narcotic was prescribed. And when Kosta and Eleni watched Theo throw up an incredible amount of blood with the lining of his stomach, they could not imagine their son’s struggle being any worse.

And during this difficult time, he and his sisters missed each other desperately. They would video chat every day and read each other bedtime books each night via FaceTime. But it was hard for them. In a short video chat, the girls could sense and feel their brother’s battle.

Theo would say, “This is not fair. I want to go home. Having cancer is the worst thing.”

At home, Sophia would cry at night and say, “I miss Theofanis.”

Deme secretly wrote in the following answer to a question in a diary she had just bought at the school book fair: Q: Who is the one person in the world you would change places with? A: My brother. (Yes, mom peeked at her daughter’s diary, and she’s so glad that she did because she was reminded of how incredibly compassionate, caring and selfless her eight year old daughter is! And how much she loves her brother!)

Each day Kosta and Eleni prayed that the current day would end and the next day would come quickly.

Post transplant: Day +8
Theofanis’ fever finally broke, and all the bacteria cultures continued to come back negative. His counts were still basically at zero, though. But there was a glimmer of light when the previous week’s redundant WBC results of <0.1 turned into 0.2!

Post transplant: Day +9
0.9! Theo’s white blood count was 0.9! And his absolute neutrophil count was 740! This was the definite sign that his stem cells engrafted! His beautiful, wonderful, powerful stem cells have “taken over”! And it showed. His doctors and nurses kept commenting that Theo looks great! Still filled with uncertainty, Eleni and Kosta kept seeking affirmation, “Really? Are you sure?” But then, late that night, Theo had a secret visit from a very special lady, Rene Pournaras, aka Yano’s mom. Rene has also lived this neuroblastoma nightmare and has continuously provided the Yianas family support, strength, advice and hope. Rene, who saw her son go through his own stem cell transplant, turned to Eleni and said, “He looks good.” Those three words from Rene finally re-assured Eleni. And when Rene blew up a latex glove to the size of a beach ball and tossed it to Theofanis, Eleni smiled at the sight of her son returning the toss with a huge grin on his face.

Post transplant: Day +10 through Day +14
The morning of Day +10, the door to Theofanis’ hospital room flung wide open and Dr. Cunningham appeared in the doorway with a HUGE smile on his face and announced, “Look, I have both doors open!” When the team of residents shuffled into Theofanis’ room, Eleni saw that the first door leading to the “outside world” was left open and Theofanis was exposed to regular non-hepa filtered air for the first time since his admission. Dr. Cunningham delivered the good news that his counts had recovered! His WBC was 2.2 and his ANC was 1100! Dr. Cunningham also suggested that Theofanis get moving. With a “94” respiratory mask, Theofanis took a stroll around the 6th floor of Comer! Smiles and waves came from all the nurses and staff who saw Theo out of bed for the first time in weeks!

So, the buzz of an early discharge rang in everyone’s ears! Theo’s mucositis was improving, his temperature was normal, his GI tract was stable, and as long as his counts continued to skyrocket, there was a good possibility that Theofanis could go home the next week, a full week earlier than expected. This was fantastic news!

Preparations for Theo’s discharge began both at Comer and at home. The doctors started to wean Theo off the pain meds. The IV meds were changed to oral meds. The home nurse was contacted. He had a few blood transfusions along the way, but nothing out of the ordinary. The cleaning crew was dispatched to the Yianas home. Every inch of their home was cleaned and sanitized. Every carpet fiber, every wall, all the ducts were cleaned. All the live plants were removed. UV air purifiers were installed, too. Admittedly, Eleni and Kosta felt a sense of nervousness about going home. They had to have everything perfect, everything clean, everything done to prevent their son’s delicate immune system from being exposed to anything that could compromise his recovery. “Are we going home too soon? The other transplant kids are still in the hospital.”

“Of COURSE he's being discharged early...he's Theo! Super Theo!” When Carrie Stotz, whose son Aidan has been victorious against this neuroblastoma beast, sent this to Eleni in an email, a feeling of re-assurance settled in. When the doctors would say, “He’s doing great…We’re thrilled with how he’s doing…He looks fantastic…” Eleni and Kosta would respond to them seeking affirmation, “Really…Are you sure?…What should we watch out for?....” But when Carrie reminded Eleni of how “SUPER”, their son is, it was a much needed reminder that Theo can do anything! And when he does something (consciously or subconsciously) he does it to the best of his ability, and he does it to win!

So the reality of a discharge date led to excitement for everyone. Eleni and Kosta started to pack up and take home the items that adorned Theo’s hospital room. From completed lego sets, toys, and books to all the cards and posters that covered his walls to the food in their make-shift pantry, slowly, Theo was moving out! And when Carly and John Saltis, whose son Stahi has just finished his treatment to knock out this neuroblastoma beast, dropped of a home-cooked meal for Kosta, timing could not have been better as the existing food supply dwindled.

Post transplant: Day +14 through Day +18
Theo was disconnected from his IV pole and discharged 14 days after his Stem Cell Transplant (aka Stem Cell Rescue). He was discharged on November 9th, the Fest Day of Saint Nectarios. Saint Nectarios is the saint and healer of cancer, and the Yianas’ have been praying to him to bestow a miracle upon their son for his cure. And on this day, an extra special thank you went out to Saint Nectarios for helping in Theo’s recovery to be discharged a whole week earlier than initially expected.

Theofanis was released to Ronald McDonald House. The transplant team insisted that Theo spend his first few days “out” at a location close to the hospital. According to the doctors, most problems arise within 24 hours of discharge. And because Palatine is well over 30 miles away from the University of Chicago hospitals, the transplant team made arrangements to get Theo situated at RMH. About two blocks away from Comer, Ronald McDonald House would be Theo’s temporary home. For the first few days, Kosta stayed with Theo. He had to learn the nerve-racking task of preparing and administering Theo’s TPN (IV nutrition). They mostly stayed in the room, so Kosta also had the task of preventing boredom from settling in. A clinic visit on Friday showed that Theo continued to recover nicely, but their hopes of being allowed to go home burst when the transplant team insisted Theo stay at RMH through the weekend. But all was not so bad…Theo was told that his sisters could stay with him at RMH! So, on Friday night, Eleni packed up the girls and headed to Hyde Park for the family’s much anticipated reunion.

It was a fantastic reunion filled with smiles and hugs! A few tears of joy were shed, too, as you can imagine.

Ronald McDonald House is like a hotel, but with a communal kitchen. The rooms are simple with beds and a bathroom. No TV, though, which was tough. Theofanis’ room was on the third floor and near the “lounge” which had a TV. But, he could only be there if others weren’t. The workers and volunteers were nice. There were families there from all walks of life and cultures. Groups would come in at each meal to prepare food for the patient families. Because Theo is on very strict dietary restrictions, the Yianas’ had to cook their own meals. Theo wore his mask when he left the room. And even in the room, Kosta and Eleni would only allow Theo to use linens and blankets they brought from home. It was fairly clean (you had to clean the room yourself) but in no way was it nearly as clean as the Yianas home.

Post transplant: Day +19 through today
When the weekend finally came to an end, Theo returned to the Hospital Clinic for labs and check-up. He got another “thumbs up” and Dr. Cunningham gave him the official OK to go HOME! Good thing because Kosta and Eleni already had packed up the car and checked out of RMH. (They were going home no matter what!) They also got the ok to start cutting back on Theo’s TPN because over the weekend, Theo started eating…real food!

So, on Day +19, Theo and his family finally went home! And since that day, Theo’s been happy! His sisters have been happy! And, his parents are happy that Theo is recovering well. And everyone is thrilled beyond words that their family is together!

So, what’s been going on since he’s been home? He’s been feeling fantastic! TPN was cut completely within the week, his Clinic Visits were cut from 2 to 1 a week, and he’s totally off the pepcid and anti-nausea meds. Theo is technically in isolation, so he has very little interaction with others. He was able to begin meeting with his home tutor, though. And, he actually is enjoying his “school time” at home. Kosta and Eleni are making every effort to keep Deme and Sophia as healthy as possible. But, there were a couple of scares last week when Deme had a sore throat and stuffy nose and Sophia threw up one night. Panic set in for Kosta and Eleni and extra precautions were in effect. Even Kosta and Eleni were feeling run down and not 100%. But, Theo managed to ward off any germs. (Remember, those super cells really are super!)

The Yianas’ also spent a very quiet and relaxing Thanksgiving at home. Their cooking restrictions made preparing dinner a bit more challenging this year, but at the end, everyone enjoyed their Thanksgiving meal. (Well, except for the canned ham. It was simply terrible!) But, the best part of the holiday was that they were all together. The Yianas Family has a lot to be thankful for! Family, friends (new and old), their doctors, their church, and the prayers coming in from all over the world, are just a few of the blessings that they are immensely thankful for. And as Thanksgiving came to an end, the Yianas family tradition of Christmas preparations began. Every year on the day after Thanksgiving, the whole family decorates for the holidays. They decorate their tree. (This year, though a real tree is against transplant rules.) They set up the holiday lights, they hang the stockings and all the garland. Admittedly, Kosta and Eleni talked about keeping Christmas “low key” this year, but they reverted back to keeping tradition and keeping things as normal as possible. So, the house is ready for the holidays and the letters to Santa are written and mailed. And although the kids realize that there’s a very good chance that they will not be together on Christmas, they are focusing on the moments now and immensely enjoying the time they are spending together.

What this Stem Cell Transplant has taught us about Theofanis
Everyone who has ever met Theofanis knows that he is a very respectful child. And, if you remember, one of the first things that you read about him on this blog is that he likes to win. And at no time more apparent than during this transplant, these two qualities that are innate in him became obvious to his parents. The best way to describe Theofanis is that he is respectfully competitive. And that’s exactly how he’s been fighting this Neuroblastoma beast. Neuroblastoma is his competitor. He is fighting it with determination, grace and tolerance. The strength of his mind, the strength of his body, the encouraging cheers from his supporters and teammates, powered by prayer, are the tools he uses to compete against it. And when he finally defeats this cancer, he will instinctively raise his arms in victory, most likely not say a word, shake it’s hand for a final “goodbye”, and he will move on.

WITH LOVE, FAITH AND PRAYER, HE WILL WIN!

Theofanis will be admitted to the hospital on Tuesday, December 6th to begin his second stem cell transplant. December 6th is the feast day of Saint Nicholas. Please pray to this great saint to protect him once again as he goes through another round of high dose chemotherapy, another stem cell rescue, and weeks of recovery. Please pray that his body fights hard, that he wards off side-effects, and his super cells come back quickly. Please pray that his physical and emotional pain is minimal. And please pray that through a miracle, Theofanis may somehow be allowed to see his sisters on Christmas Day, which is also his 7th birthday.
 

A Brief Update

Hello. This is the Yianas' friend, Galinda. I, like most of you have been waiting for news about our beloved Theo. I, like you, have been cautious about trying to contact the family, because we all know the difficult road they are all on right now. Eleni and I have exchanged brief texts. I thought I would share this one, because it has a lot of information and wonderful things to celebrate. 


From Eleni, Sunday at 6:56 PM


Hi everyone! Thank you all for your notes, texts and phone calls during these past few weeks while Theofanis has been recovering from his transplant and please forgive us for not keeping you fully up to date in his progress. It has been over two and a half weeks of extreme emotions and exhaustion for us. We have not had the energy or time to make any blog updates either. My goal is to write something tomorrow night when we are all home. Yes, that's right. The plan is to go home tomorrow! The days following the transplant were very difficult for Theo. Fevers, extreme pain. mouth sores, swelling, itching, rashes, vomiting and other things you do not want to see your child suffering through. Then, a week after the transplant, his fever lessened and there were signs that his new stem cells were taking over! Last weekend, his counts shot up and have stayed strong ever since. And, NO infections!!! Theo was released to Ronald McDonald House on Wednesday-- a full week EARLIER than anyone expected. (By the way, Wednesday was the feast day of St. Nectarios, the saint for cancer. He had his transplant on St. Demetrios and discharged on St. Nectarios!) The doctors confirmed that he did great! So, we had a mad scramble to move up our house cleaning schedule since he was now going be home early. Per doctors orders, we needed to get the house sanitized from carpets to walls and air ducts to air purifiers. It is now all done and ready for him to come home! so today, the family is hanging out RMH (yes,with the girls, too) and tomorrow morning he foes to clinic for labs and then home. We are all extremely happy that we are all together! God is guiding Theofanis through this battle and helping him fight the best he can along the way. Thank you everyone for your prayers and love!


I am so grateful to read this wonderful news and to share it with those of you that are following Theo's progress. I love each of you- Theofanis, Eleni, Dean, Demetra and Sophia. My prayers are forever with you. I can't wait to celebrate with you all. Theofanis' fight reminds me of the verse from Isaiah 40:28-31.


The LORD is the everlasting God, the Creator of the ends of the earth. 
He will not grow tired or weary, and his understanding no one can fathom. 
He gives strength to the weary and increases the power of the weak. 
Even youths grow tired and weary, and young men stumble and fall; 
but those who hope in the LORD will renew their strength. 
They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.


Theo you will win and soar on wings like eagles!

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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