Immunotherapy #2-A and Theo's Day +100 celebration!

Theo with a bowl of fresh fruit and his
super large "100" ballons and poster
signed by his doctors and nurses!

Friday, March 23rd was a very, very BIG day for Theo:

• He completed the first half of his Immunotherapy Round #2 (IL-2 infusion) completely asymptomatic! It was by far, the quietest, easiest, most boring week spent at Comer! 
• He was discharged from the hospital and sent home to spend the weekend with his family!
• He celebrated the end of his "100 Days" post-transplant isolation! (Which was really more like 150 days since he had two transplants.)
• He was done taking Acyclovir, the twice daily, worst tasting, oral medicine he obligingly took for nearly 140 days straight.
• He went to school for 1/2 a day, the first time in over five months!
• He ate a huge bowl of fruit filled with FRESH strawberries, FRESH pears, FRESH apples and FRESH bananas! And, he took a shopping trip to Whole Foods where he filled the grocery cart with more FRESH fruits and vegetables!
• He ate pizza from Rosati's!
• He went to bed extremely happy!

The entire Yianas family went to bed that night very, very happy!

Yes, Friday March 23rd was the start of a very "normal" weekend for the Yianas Family. They were back at doing normal family activities without restrictions. They went to the movies and saw The Lorax. They went video game shopping using Christmas/Birthday present gift cards, they went out to breakfast, lunch and dinner, and they went to church where Theofanis served in the Altar. They saw both Giagia Sofia and Giagia Agni. They hung out with their cousins, Demetri, Sofia and Anna, too.

And, when Theo went out in public, there was nothing to draw attention to him. There was no mask telling people, "I'm immunocompromised." No pale skin. No bald head. Nothing telling the world, "I'm battling cancer." All anyone noticed was a smiling, happy kid with a buzz cut!

And actually, something happened during his 1/2 day return to school that made everything seem "normal" for any seven year old. Theo got picked on by a fifth grader! Really! Here's what happened: Theo was wearing a Cubs hat while waiting to be picked up after school with his sister. A fifth grader wearing a Sox hat went up to him and flicked off Theo's baseball cap. When Theo put his hat back on, the boy flicked it off for the second time. So, Theo then decided to give it right back at him. He went up to the fifth grader and flicked the boy's Sox cap off of his head. Then, the boy flicked off Theo's cap for the third time. So again in second retaliation, Theo flicked off the fifth grader's cap.  Finally, the boy realized that this first grader wasn't going to back down, so he gave up and walked away. In the midst of this, Deme went to Theo's aid, called the boy "mean", but realized that Theo had things under control. She watched her younger brother stand up for himself! Little did this fifth grader know that Theo has faced and has overcome much scarier things than a bully's attempt at intimidation. So, during dinner that night, Eleni and Kosta unexpectedly had to teach their son about bullies, how to deal with them, and how to make sure he doesn't end up in Mr. Kerkemeyer's office with a possible detention. (Note: Mr. Kerkemeyer is a Cubs fan.)

The Yianases actually have a confession to make. They slightly broke the "rules" before Theofanis' 100 days of freedom. Theo was feeling great, his counts were good, and he was getting stronger each and every day. The weather was summer-like and by day +90, Theo was itching to "get out of the house." There were frequent signs of sadness of not being able to see his friends or go to school. So Kosta and Eleni selectively and cautiously chose an outing or two or three. The first was attending the Marion Jordan "Fun Fair." The second was attending his sister Deme's Volleyball Tournament. The third was going to church the day he was starting Immunotherapy #2-A. Although it was not what the doctor ordered, it was exactly what he needed. With unexpected tight hugs and kisses for his mom and dad, he would simply say, "Thank You, Mommy and Daddy." But the smile on their son's face said more.

THE SPOT
Theofanis is undergoing his second round of Immunotherapy. This is a two-part treatment program. He completed part A last week while he was inpatient. He received a 24-hour infusion of IL-2 (interleuken) for four continuous days. This was the first time that Theo received this drug and it was unknown what side effects would surface during this infusion. The list of risks filled two pages of the COG protocol; some kids get through it without any issues; other kids have serious life-threatening side effects. Fortunately, with God's grace, Theo had no issues whatsoever with the IL-2 infusion. He was in great spirits throughout the week (outside of a few bouts with boredom). He was not in pain. He had no fevers. His appetite was normal. His blood pressure, heart rate, oxygen levels and all his vitals were normal. He was talkative and he even played Wii with his nurse, Frances. He was discharged right after the infusion was done on Friday. Kosta and Eleni both agreed this was the easiest week that Theo spent in the hospital. The only unfortunate thing about the week was that Theo and dad missed Demetra's Greek dance troupe performance and Sophia's Pythagoras Children's Academy program in honor of the 25th of March Greek Independence Day.

WITH FAITH, LOVE AND PRAYER HE WILL WIN!
"Unless someone like you cares a whole awful lot, nothing is going to get better." - Dr. Seuss. This was the message in the movie, The Lorax.  And when the Yianases saw that statement printed on the big screen, they thought about how true it is for all the families who are battling childhood cancer, and how applicable it is to their son's own fight.  If it wasn't for all those people who care, for all those people who have shown their love and support for Theofanis, for all those people who are praying for their son...if it wasn't for all of you...it would have been hard for the Yianases to imagine that one day things would be better...and continue to get better.

This time of year, an organization called St. Baldrick's holds thousands of head shaving events throughout the U.S. to raise money and awareness for the need for childhood cancer research. This year, a team from Jay Stream Middle School (Cousin Sophia Haab's school) under the team leadership of Officer Diane Wells, shaved their heads in honor of Theofanis! On March 9th, the Jay Stream team of teachers and students gathered at Dave and Buster's in Addison and joined hundreds of other people who raised money and shaved off their locks for the children fighting pediatric cancers. So, a huge thank you to Officer Wells and the others who care enough about Theo and all our children to express such a wonderful act of kindness and compassion! With you, things will get better!

Immunotheraphy Round 1

WHAT IS IMMUNOTHERAPY?
If Theofanis' scans show no evidence of disease, why is he continuing treatment and doing Immunotherapy?

Theo's next phase of treatment called immunotherapy is purely focused on the prevention of relapse. The cause of relapse is usually from minimal residual disease (MRD). MRD refers to the presence of neuroblastoma cells too small and too dispersed throughout the body to be detected by standard tests and scans, even after remission. This treatment is designed to train the body's own immune system to detect and destroy neuroblastoma cells that have survived chemotherapy, transplant or radiation therapy.

The treatment involves the injection of a substance called monoclonal antibody ch14.18 into the bloodstream. The antibodies then seek out and attach to neuroblastoma cells and signal the immune system to destroy them. The antibody ch14.18 (a chimeric antibody -- part human and part mouse) is just one of the medicines Theofanis is getting over the next six months of Immunotherapy treatment. He will be receiving infusions of IL-2 (Aldesleukin) during certain rounds of immunotherapy which is shown to increase the anti-cancer effects of the monoclonal antibody. These drugs are administered similarly to chemo. Theo will also be taking GM-CSF injections to help boost his overall immune system and oral cis-Retinoic acid (Accutane) which teaches any undetectable neuroblastoma cells to stop growing and turn into mature nerve-like cells that do not grow and divide.

Theofanis is closely monitored during this phase of treatment. There are many risks and side-effects that can develop while he is receiving the infusions. Because there's risk of the body rejecting these foreign antibodies, many of the side effects are completely unpredictable and can change on a daily basis.

Eleni and Kosta met with Dr. Cohn several times to discuss and prepare for their son's Immunotheraphy treatment. They precisely reviewed the dosing plan. Dr. Cohn also spent time explaining possible side effects and counter-treatment options. Because some medicines cannot be administered using the same central line that's receiving the chimeric antibody, she suggested that the Yianases consider surgically implanting another "port" in Theofanis' arm to avoid the use of an uncomfortable poke IV in his hand or arm. Initially hesitant to even consider another access point in their son's body, Eleni and Kosta decided to discuss the option with Theofanis and allow him to make the decision. Without much hesitation, Theofanis opted against a port (he didn't want tubes hanging from his arm for six months) and he opted against an IV poke...he chose to just deal with the pain and side effects from the treatment. But, after hearing from his parents that "dealing" with pain was not an option, Theofanis chose to get a poke and and IV...that is, if and when he may need it.

THE SPOT
On the evening of Sunday February 26th, Theofanis returned to the 6th floor of Comer Children's Hospital to begin his first round of Immunotherapy. Accompanied by his mom, dad, and two sisters, he was directed to the same isolation room that he called "home" during his second stem cell transplant in December. Sunday evening was a quiet night. The Yianas family set up their familiar iconostasis. Since Theo's stay would be limited to (hopefully) five nights, decorations were kept at a minimum. Photos of family and friends, a hand-drawn aquarium mural on the window, and a massive Star Wars Lego set were the focal points of his room.

After Kosta, Deme and Sophia hugged and kissed Theofanis goodbye, Eleni and Theofanis settled in for the night, knowing that the next morning, the doctors, nurses and pharmacist would be arriving early to begin Theo's ch14.18 antibody treatment.

The one side-effect that the doctors guaranteed Theo would have was pain. They explained that the antibodies attach to nerve receptors throughout his body so he would be in an extreme amount of pain during each day's 10-hour infusion. So first thing on Monday morning, the medical team connected Theo to a continuous morphine pump and slowly increased the amount and rate of the pain medicine to a predicted baseline level. Kosta soon arrived at the hospital, as both parents felt it was important to both be there on this important day. Then the ch14.18 arrived in a small bag marked "experimental". It was hung on his IV pole and the infusion started at a half rate for the first half hour. Closely monitoring his blood pressure, heart rate, oxygen levels and looking for any clinical signs of allergic reaction, his nurse seldom left Theo's bedside. With no immediate signs of an adverse reaction, the infusion was increased to the full rate and for the next 9.5 hours, the antibodies were taking hold and the next fight in Theo's journey began.

Theo kept himself busy throughout the day and did not feel any of the possible effects that all were made aware of earlier.  Yet, as the infusion was almost complete, Theo experienced some double-vision and blurriness.  As Eleni began to worry, she was assured that this was a possible effect and would dissipate once the infusion was complete for the day.  Theo fell asleep as his first day of the treatment ended.

Kosta relieved Eleni on Tuesday and stood by the next few days as Theofanis experienced many different side effects.  Theo's side effects ranged from hives on his head and continued pain to itchiness and spot rashes all over his body.  These events also resolved themselves after the infusion was complete for the day and were gone by the next morning.

However, Theofanis experienced a very high fever from Tuesday night which he could not shake.  At its highest level, his temperature reached 104 degrees and was not even relieved with Tylenol every four hours.  As a result, he was put on antibiotics as a precaution and blood cultures were taken every day to rule out bacteria as the cause. His heart rate was elevated yet his blood pressure became very low.  The doctors decided that a blood transfusion was necessary and Theo received the transfusion overnight Wednesday.

Each day brought a new challenge, but Theo was ready and determined to accept it.  He took his daily medicines orally, sometimes in the middle of the night, and did not complain.  Although from time to time he was sad, he was mostly bored and wanted so badly to go home.  He completed a thousand piece Lego set in about 6 hours that Nouna Evy and Nouno George gave him as a present on Thursday, finished his homework for the week on Wednesday, and played Wii and Ipad games to bide his time. He even caught a Bulls game on television with his dad.

Several times a day, doctors and nurses would check on him to note his progress. The doctors would always mention how well he was doing and how well he looked.  Kosta and Eleni peppered the doctors with questions about his side effects and if this could be a precedent for his subsequent therapy visits.  The answer seemed to always be the same.  Each child is different and past therapy experience is not indicative of future tolerance of the therapy.  In other words, it may or may not be a tougher experience next time.  Dr. Cohn was out of the country so the Yianases were a little ambivalent yet it did seem that Theo was doing relatively well with his treatment.  Theo's daily infusion was ten hours long.  Some patients can not tolerate the amount of medicine given during that time so the infusion can be stretched out to twenty hours long, thereby giving less medicine per hour.  Theo tolerated it well enough to stay on schedule.

Theofanis was scheduled to be discharged on Friday, yet his temperature had not abated by the time his last infusion for the first round ended on Thursday night. Kosta was told that he would not be discharged with a fever and he really should have to be fever-free for twenty-four hours before discharge.  This meant they would not be able to leave until Saturday.  One of the doctors once told Eleni and Kosta that these discharge dates and times and restrictions can be negotiable -- so Kosta started to negotiate.  He finally received the go-ahead that if Theo remained fever-free that he would be discharged twelve hours from the last fever, or Friday afternoon.  It came to pass that Theofanis was fever-free after 2am Friday morning and so when Eleni arrived Friday morning, the Yianases prepared to leave the hospital at 3pm Friday afternoon.  Round One of Immunotherapy complete!

Dr. Cohn indicated that, unlike chemotherapy, there should be no lingering side effects from the Immunotherapy and that Theo should get back to normal after coming home.  It took a couple of days, but Theo was himself by Monday.  Routine blood tests later that week and next showed very good and normal results.

Theofanis is now scheduled to return to Comer this Sunday for another five days, back home for the weekend and back in the hospital the following Sunday for another five days at the end of March.  If all goes well, Theofanis will go back to school the first week of April as his 100-day isolation period ends on March 23rd.

As a side note, please look on the right side of this page and click on the video that was produced by Bear Necessities, a video that features several children battling cancer, including Theofanis.  The video was produced in December while Theo was preparing to go for his second stem cell transplant so he was in mid-treatment at the time.  Bear Necessities is a wonderful organization which provides fundraising opportunities to help with research, awareness and attention to the existence of childhood cancers, and comfort to the children and their families who fight and go through the experience.  This is a very moving piece that, should everyone view it, may just get enough effort to finding cures for these cancers.  Please view it and alert others to it. 


WITH FAITH, LOVE AND PRAYER HE WILL WIN
Theofanis started his antibody treatment on Clean Monday, the first day of Great Lent...
Like the other great feast days that marked milestones in Theofanis' chemo treatment and both transplants, we pray that God will continue to protect him....  A blessed Lent to all as we prepare for the Feast of Feast Days -- the Holy Resurrection.

As Theofanis' isolation period ends in eight days, he looks forward to attending church on March 25th, the Annunciation of the Virgin Mary.  He has said many times that he cannot wait to serve in the Altar again, as he misses everyone and his beloved St. Demetrios.

Test and Scan Results Are In

Dearest Family and Friends,

Over the past three days, Theofanis underwent a full series of tests, scans and a biopsy as part of his post-chemo, post-tandem stem cell transplant, and post-radiation treatment protocol. All final test results were expected to be complete by today.

Happiness is...catching snowflakes.
Happiness is today!

Anxious and nervous, we finally received the call from Theo’s oncologist Dr. Cohn with news that “this series of scans does not show any evidence of disease!”  His bone marrow is clear, the MIBG scan shows nothing, and the CT scan confirmed no new masses, a clear abdomen, and the tumors on his cheekbone and arm are fully matured ganglioneuromas, which means that they are benign.

We are thrilled beyond words to be able to share this news with you. And we sincerely and humbly thank you all for your infinite support, your never-ending prayers, your words of encouragement, your acts of kindness, your generosity, your hugs, your tears and your priceless love and friendship. 

Theo’s journey is not over quite yet, though. He will be starting his last phase of treatment on Monday. He will undergo six months of Immunotherapy, a new treatment for neuroblastoma which has proven to show a remarkable improvement in survival rates by 20%. This treatment, which utilizes antibodies, basically kills microscopic/undetectable cancer cells that could be lingering in the body and greatly reduces the risk of relapse in neuroblastoma patients. It is a difficult and painful treatment, but we’re hopeful and we’ll continue to pray that Theo tackles this phase with the same strength and winning grace that he’s shown over the past 10 months.  

On that dreadful day when our son was diagnosed, we told Theo, “We will do everything possible to make the cancer go away and to make sure it never comes back!”  With Faith, Love and Prayer and with YOU, we got the first part done, and now we’re onto the second part. And again, we can’t thank you all enough for everything you’ve done and continue to do to help us keep our promise to our son.

And finally and most importantly, we must thank our Almightly God, Christ, the Theotokos, and all the Saints for this miracle that they have bestowed upon our son and our family. We thank you Lord for placing your arms around Theofanis and protecting him and leading him to this day. We humbly pray that you continue to place your strength within him and around him, always keep him healthy and cancer-free, and guide him through a long, long and happy life. And Lord, please, please protect all of your beautiful and precious children.

With all our love,

Eleni and Kosta

Patient # 367 Completes Proton Radiation Therapy!

On Thursday, February 16th, Theofanis was the 367th patient to "graduate" from the Procure proton center. With applause and cheers from the entire Procure staff, Theo successfully completed his radiation treatment!

It was a heartwarming scene as Theo said goodbye to his radiation doctors and nurses, and then walked into the lobby to find dozens of staff, technicians, and others lined up to congratulate him and bid him farewell. He was presented with gifts, a cake, his countdown calendar, a diploma, and an engraved medal. His sisters and parents accompanied him on his last day of treatment to join the staff in honoring him for his bravery and stamina as he underwent seemingly endless hours of laying still as proton beams zapped the three cancer-striken areas of his body. The celebration went beyond the fact that Theo was done with radiation, but that he was able to remain strong throughout the treatment. Besides having a slight "sunburn", he had no side effects!

The Yianas family was extremely grateful to the entire staff at Procure in Warrenville for the wonderful care they gave Theofanis. They were all so kind, open, friendly, helpful, and attentive: Dr. Hartsell, the center's director and Theo's radiation oncologist; his super cool nurse Anne; Peresh the Doseologist who spent hours going through the dosing plan with Eleni and detailing out the exact path of every proton beam their child received; Kelly who dealt with the insurance issues; the always smiling reception team that would send Theo home with his daily snack; and the teams of radiation technicians who prepped him and carefully administered each beam. It felt as if each and every person picked up a sword and was fighting alongside Theo during this part of his battle against cancer.

THE SPOT

So with Radiation complete, the next phase of treament begins. Before the immunotherapy orders and consents can become official, Theofanis must undergo a full battery of scans and tests that will determine the status of his disease. And after the results are in, he will be re-staged. Theo's testing begins on Monday February 20th, and over the course of the following three days, he will make daily trips to the University of Chicago with back-to-back visits to nuclear medicine, radiology, cardiology, clinic and other departments.

His schedule is as follows:

Monday

• Bone Marrow Biopsy with sedation (marrow is taken from his pelvis and sent to pathology to scan for any neuroblastoma cells in his bone marrow.) 

Tuesday

• MIBG Scan #1 (a radiation injection that has an affinity to neuroblastoma is picked up during this scan and lights up where there are active neuroblastoma cells)
• Audiogram (checks for changes in his hearing that could be caused by high dose chemotherapy drugs)

Wednesday

• MIBG Scan #2 (second scan to complete the four images the radiologist requires in order to identify active neuroblastoma cells anywhere in his body)
• Echocardiogram and EKG (checks heart health and function)
• CT Scans of head and body (Identifies and determines size of solid tumors.)
• Pulmonary function test (checks health and function of lungs)

Results of all the tests are expected on Thursday. In the neuroblastoma community, families identify these days of testing and waiting for results with "Scanxiety." Anxiousness and fear are the overwhelming emotions that take over. And for Eleni and Kosta, these days are going to be filled with these and other emotions...along with never-ending prayer. And let's remember, what's gotten the Yianas family through to this point in Theofanis' journey against cancer is LOVE, FAITH AND PRAYER.

 HAPPY BIRTHDAY SOPHIA!

On Saturday, February 18th, Sophia woke up to find five colorful balloons adorned on her bedroom door in honor of her fifth birthday! With a quiet celebration at home, the Yianas family started the day with a special breakfast and ended it with a yummy ice cream birthday cake! Sophia had a smile all day long as she played with her brother and sister throughout the day. Happy 5th Birthday, Sophia!!!!!

The Next Phase of Treatment Begins

Theofanis has passed the half-way point of his 100 days of post-second-transplant isolation. He is technically at Day +51. However, that doesn’t include the timeframe from his first transplant. So, if you rewind and include those days, he’s at Day +100.

THE YIANAS FAMILY SPENDS A LOT OF TIME COUNTING

They count backwards to the day Theofanis was diagnosed in May:  9 months ago tomorrow. They count back even further to the day he told his parents his arm hurt: 10-1/2 months ago. They even remember the night he lay in bed in January of 2011 and he pointed to his left elbow and said, “my arm is sore”: one year and one week ago.

Theofanis himself counts a lot. 638 courage beads. 85 nights in the hospital. 37 blood transfusions. “I really won’t see my friends or cousins for over a half year,” he told his parents. He is right. Besides his mom, dad, sisters, doctors and nurses, and outside of the occasional peek at folks from the car, he’ll have been away from the many people and things he loves for longer than any child deserves to.

But there are things that they are counting now that in the past they took for granted too often. Everyday the Yianas family counts their blessings. “We thank you, Lord for all the blessings that you have given us: for our family, our friends, our church and for all the prayers that are coming in from all over the world.” (Just to name a few.)

The Yianases are also counting forward. 49 days left until their son can finally hang out with his friends and family and even go to school. 50 days left until they can go out to dinner and a movie. 51 days left until they can once again go to church together as a family.

However, from the treatment side of things, their math is not so precise. They spend a lot of time estimating instead: Twelve days of radiation. Two days of scans and re-staging. Six months of immunotherapy. And without a hard-core date of when all this will finally be over, their sites are set to sometime in August when they pray that their son will be done with treatment and free from the grips of cancer.

Until then, they continue to move forward, and Theo continues to fight. And he again proves that he is one tough, tough kid.

THE NEXT STEP IN THE BATTLE – ZAP THOSE TUMORS!

Pleased with Theofanis’ early progress during his post-transplant recovery, Dr. Cohn made arrangements in January for the Yianases to meet with Dr. Connell, the U of C radiation oncologist who would be overseeing Theo’s radiation plan. The next step of the treatment protocol for Stage IV Neuroblastoma is radiation therapy. The protocol states that patients require 20 days of radiation to the primary tumor bed (post resection) and all active areas of solid disease. So, Theofanis would receive radiation in three areas: his adrenal bed where the primary tumor was removed, his left ulna which still showed slight uptake during his MIBG scan prior to transplant, and his left cheekbone which shielded a tumor mass that may or may not be active.

Sparked by a suggestion from Theo’s home nurse Joanna, the Yianases decided to research different options of radiation therapy. Joanna told Kosta and Eleni that Children’s Memorial Hospital sends all their patients with brain cancer to be treated at a proton therapy center in Warrenville. And because Theo would be receiving radiation to his head, proton therapy may be a safer treatment option because there’s less “scatter” of dangerous radiation to healthy cells. So, back in October, they asked Dr. Cohn about the pros and cons of proton therapy. Proton beam radiation therapy is not a recognized radiation option for neuroblastoma by the Children’s Oncology Group and is not part of the treatment protocol. Nonetheless, Eleni and Kosta wanted to understand the difference and whether it was an effective treatment for their son’s tumors. On their own they did not find much research on proton therapy as a treatment for neuroblastoma. But, they continued to ask about it.

The radiation oncologist’s original plan was to use standard x-ray radiation to radiate the adrenal bed, the arm and both of Theo’s cheekbones in order to prevent asymmetrical bone growth. Concerned about how close the tumor was to his brain, Dr. Connell decided he could radiate from the sides of Theo’s face which would virtually avoid the brain. The word “virtually” would echo through Eleni and Kosta’s heads for months.  But it appeared that the Comer Team was comfortable with the plan and felt it was the best way to target the tumors.  But as we all know, Eleni and Kosta are relentless at asking questions, so they would periodically remind Dr. Cohn that they still wanted to understand the difference between standard and proton radiation.

So, when the Yianases had their first consultation with Dr. Connell to go over the radiation treatment plan, they were shocked when the first few words they heard was, “We think Theo will benefit from proton beam radiation therapy.” Actually, Kosta and Eleni were stunned. They asked Dr. Connell why he changed his mind. He proceeded to tell them that he was thinking about it for over a month and knowing that Eleni and Kosta were passionate about exposing their child to the least amount of risk, he thought that proton beams would prevent more healthy cells from being exposed to radiation. One of the possible side-effects of radiation is the risk of developing secondary cancers. Less radiation would obviously reduce that risk. Since the University of Chicago does not have a proton therapy facility, Dr. Connell had already contacted Central DuPage Hospital’s Procure Proton Therapy Center and discussed Theo’s case with the oncology team there. There were other factors that also led the doctors to agree and recommend proton therapy:

1. The tumor behind his cheekbone is very close to his eye.
2. The tumor on his left ulna (elbow) is on his growth plate.
3. The tumor bed of his left adrenal gland is very close to his kidney.

With x-ray beam therapy, the radiation passes through the entire body, and the beam even expands as it passes through the tumor site. With proton beam therapy, the radiation beam can be controlled to stop directly at the tumor site, sparing healthy tissue.

So, with that recommendation and with the good news that COG committee agreed that Theo would get low-doses of radiation for only 12 days, not 20 (because our fabulous surgeon Dr. Liu did a complete resection of the primary tumor), the Yianases headed to Warrenville to meet with the director of the proton center facility, Dr. Hartsell.

It was tough to imagine nicer people than those at the Children’s Hospital, but when the Yianases walked into the Procure Center, they were smothered with niceness! Theo, Deme and Sophia were showered with smiles. And while Kosta and Eleni (armed with nearly 100 pages of test reports and 6 CDs containing images every scan Theo has ever taken) recapped everything their son had gone through, the team listened attentively. Then they promised to collaborate with the radiation oncologist at U of C, knowing that Eleni and Kosta have zero tolerance for miscommunications of any sort.

So, the Yianases agreed that they would move forward with proton beam therapy for their son. Because few neuroblastoma children are treated with proton radiation, this treatment could be considered “experimental.” But they were reassured by a couple of facts: (1) the Children’s Hospital of Philadelphia (CHOP), one of the top hospitals in the country, uses proton beams for their neuroblastoma patients (2) the COG is re-evaluating the neuroblastoma protocol to allow proton beam therapy in the very near future (3) Dr. Cohn supports the recommendation of proton therapy as a safer treatment for Theo, even though he would be pulled off protocol and (4) the effectiveness of the treatment is the same. And, although they are still fighting with issues of trust, Eleni and Kosta believe that every doctor at Comer is thinking about what’s best for Theo because they all have a vested interest that he does well and WINS his fight against cancer.

THE SPOT

Before treatment could start, Theo had to go in to take scans, create molds and a mask, and get a few tattoos. The scans were the baseline for lining up each radiation beam he would get during his 12 rounds of therapy. The mold was to help him lay still and comfortably on the radiation table during the many hours he would need to be in position. The mask was to cover his face, help the technicians pinpoint the beam and keep his head and face perfectly still during radiation to his head. The tattoos (little blue dots) were placed on his arm, abdomen and back, citing where the proton beams need to hit every single day. By the way, yes, they are real tattoos. They don’t wash off.

So, Theo spent several hours at the proton center just to be prepped. It actually took twice as long as expected, which was trying on both Kosta and Theo’s patience. But the radiation team wanted to make sure everything was accurate. It would take another two weeks for the mask and molds to be ready at which time Theo’s radiation could begin.

On Wednesday, February 1^st, Theo had his first proton beam radiation treatment. Told it would take longer the 1^st day because of set up, the Yianases were expecting the procedure to take 1-1/2 to 2 hours. Theo changed into a gown and was escorted into the radiation room. “Wow, it looks like a part of the Death Star,” he said as he gazed at this futuristic equipment. Instantly, all the technicians knew he was a Star Wars fan. They scanned his ID badge to confirm his identity and officially start the procedure.  Theo climbed onto the table and settled himself in his body mold. The technicians then placed his mesh molded mask over his face and secured it tight. Not a muscle in his face moved. Kosta and Eleni were asked to leave the radiation room, so they went by the “control” room where a wall of monitors were overlaying xrays onto CT scans and cameras were showing live feeds of Theofanis from multiple angles. Kosta and Eleni stared at the equipment feeling disbelief that their son had to go through this. Still, not a day goes by that they are not in disbelief.

Soon, they were escorted to the lobby where they were asked to wait until Theo was done. While they waited outside, Theo would get six beams of radiation: Two angles on his face, one angle on his arm and then three on his abdomen (2 angles alternating each day to limit radiation exposure to the kidney). He would get a dose of 1.8 gray per beam.  

So, Kosta and Eleni waited. After two hours, a technician advised that there was a problem…with the equipment. An x-ray panel was not working properly, so it needed to be fixed. Theo received one proton beam before the procedure was halted because of technical problems. Theo, Eleni and Kosta waited in a room until the equipment was up and running. Once again, Theo was taken to the radiation room while his parents were escorted to the lobby. Finally, four hours after their initial arrival, Theofanis was done with his first radiation treatment. After an explanation of the cause of the day’s delays, they left with a burn cream to apply to Theo’s skin and caution that he may feel nausea after treatment. Theo felt great, though. As usual, he didn’t really complain, but said he didn’t like that it took so long.

The next day, Theo arrived for his second day of treatment which went much smoother because he was in and out of the facility in 90 minutes. So, Theo completed three days of radiation this week. Theofanis says he doesn’t feel the proton beam, but his tummy gets a little grumbly during treatment. The mask is uncomfortable because it’s tight and he can’t open his eyes or speak. He also is a little sore when he climbs out of his body mold. But as usual, Theo is tackling this phase head on and making the best of it. Nine more sessions to go.

WITH FAITH, LOVE AND PRAYER HE WILL WIN!

Kosta and Eleni are thankful beyond all emotions that Theofanis is doing so well as he is recovering from his transplants. His entire immune system is new. And in spite of the risk of infection that is looming around him during this fragile time, he continues to have strong counts, he continues to be more active each day, and he continues to smile and laugh and reconfirm his sense of humor and the intelligence that he’s been blessed with:

While watching both classic and newer shows of Mickey Mouse Clubhouse, he profoundly commented, “Have you noticed that Goofy has gotten smarter over the years?”

While watching the Miss America Pageant, he admired Miss Texas who stood tall at nearly six feet and said, “Wow.” Then followed with, “Miss Rhode Island must be really small.”

And another critical change Eleni and Kosta have witnessed involves their daughters. Last Fall, Demetra stopped smiling. She was sad and scared, and it was written all over her face. Now, Demetra is smiling again. She’s laughing and giggling all the time! And Sophia, who will be five in a few weeks, has gone from crying several times a day to being able to express her emotions more calmly and openly.

So, physically and emotionally, the Yianas children are getting stronger every day. And Eleni and Kosta thank God every night for that wonderful gift! But in their prayers, in addition to the obvious pleas for their son’s ultimate cure and for strength during each phase of treatment, they are begging that Theo’s next round of scans will bring them good news. It’s actually eating them up right now…not knowing what effect the transplants have had on the cancer. Theo will be scanned, biopsied and restaged after radiation is done and before immunotherapy begins, which will be towards the end of this month. So, until then, we all must pray hard and ask God to deliver another miracle. Please, please let the cancer be gone!

Please let it be gone and don’t let it ever come back!

The Weeks Post Transplant #2

The mistake happened, the recovery was wrenching and worrisome, and the Holidays were emotional.   Looking back, it’s hard to comprehend how we got through it.  But looking forward, Hope continues.

On Day +1, the symptoms and side-effects from the high dose chemotherapy he received the previous week surfaced. Theofanis’ counts dropped to zero, the mouth sores appeared, and Theofanis was feeling miserable. For the first time in six months, Theofanis’ eyelashes started growing back and an even fuzz surfaced on his scalp, a sign that his stem cells from his first transplant were working hard. But  Eleni and Kosta knew that this phenomenon was temporary and all this new hair would disappear once again.  Over the course of the next week, Theofanis experienced a very difficult time. He began to have an irregular heartbeat which the doctors determined was caused by the antifungal medicine he had been on since the first transplant. The remedy was simple…stop the antifungal. The mucositis this time around was far, far worse than what he experienced before. There were more and bigger mouth sores that continued down his throat.  There were signs that the mucositis inflamed his entire digestive tract. He had blood in his urine which was caused by the inflamation in his bladder and urethra. Concerns over bacterial infections surfaced so he was pumped with more prophylactic medicines. But every culture came back negative, so finally an ultrasound of his bladder confirmed it was mucositis. The pain medicine he was on, a form of morphine called dilaudid, caused severe itching. His skin began to slough off, too. The only true remedy to his misery would be his stem cells engrafting.

Theofanis couldn’t eat of course, he didn’t feel like playing Wii, he didn’t want to read, and he didn’t want to do anything. Another thing he didn’t do was complain. “The first transplant was easier than I thought it would be, and the second transplant is a lot harder than I thought it would be,” Theofanis told him mom and dad. Of course there were tears, mostly due to his pain. But, he once again showed incredible resolve.

Then, exactly one week to the day of his stem cell rescue, his white counts unexpectedly appeared at 0.1. “It’s still really at zero,” they would say. “Let’s see what happens tomorrow.” Then on Day +8, his counts jumped to 0.3. They were going up! They were definitely going up! No one expected this. It was a reason to celebrate in addition to the events that followed that morning:

THE CROSS OF CHRIST’S CRUCIFIXION

A week or so prior, Theofanis’ godmother, Evy, had heard that a priest from Greece is travelling the US with a piece of Christ’s cross which has been known to heal the sick. And this piece of the cross was nearby at the monastery in Wisconsin where streams of visitors poured into the monastery on a daily basis to be blessed by it. Evy contacted the monastery and told the gerontisa (head nun) about Theofanis. Within days, the Yianases received a call from the monastery with news that the priest would bring the cross to Theofanis and bless him in the hospital. So, the morning of day +8, the gerontisa and Father Ioannis from Crete brought the holy cross to Comer. And their beloved Father Andrew came as well. Breaking all the rules, Eleni and Kosta told the staff that Theofanis was having visitors. And with a WBC of 0.3, they were not allowing anyone to argue with them.  This was a special visit, and the doctors and nurses knew it, too.

There was also another special thing occurring that morning. A special bond has been developing between the Yianases and two other Greek families--a bond created by a beast called neuroblastoma. Three young Greek boys in the Chicago area are fighting this cancer. These three boys were each diagnosed in the month of May, in three consecutive years: Yano was diagnosed May of 2009, Stathi was diagnosed in May of 2010, and Theofanis was diagnosed in May of 2011. Yano is done with treatment and is in remission. . Stathi just completed treatment, but with a few nasty spots that are presenting themselves on scans, is considered to have stable disease. And, of course, Theofanis is in active battle. Rene (Yano’s mom) and Carly (Stathi’s mom) have been an inspiring source of information, support and therapy for Eleni. So Eleni told them that Father Ioannis was coming to Comer to bless Theofanis, and the three moms agreed that it would be wonderful to have all three boys blessed under the same roof.

Father Andrew arrived first and visited with Theo and Kosta while Eleni was awaiting the arrival of the others.  Father Ioannis and the head nun arrived with the cross and headed to the hospital chapel to bless Yano and Stathi.  They then made their way to Theo's room where Theofanis welcomed them with a smile. Father Ioannis took a medium-sized silver cross out of a wooden box. (The piece of Christ’s cross was embedded in the silver cross.) Father Ioannis placed the cross over Theofanis and moved it across Theo's body, from head to abdomen, to limbs.  He then pulled a piece of the cotton from the case that protected the cross, gave it to Theofanis, and told him to keep it.  He also put his hand on Theofanis’ head, leaned in to him and told him that he’s going to be fine, and he expects him to come to Crete to visit him and buy him a cup of coffee when he’s a little older. Theofanis smiled again.  And as Eleni and Kosta thanked Father Ioannis and gerontisa for coming, they told them that Father Ioannis himself lost his two-year old son to cancer. It was then that he came into possession of the cross and decided to take it to those who were sick and needed healing. Father Ioannis looked at Kosta and Eleni and told them that he understands exactly what they are going through. Then, he comforted them by telling them that Theofanis will be fine! Everything is going to be ok! So the comfort that these people brought to Theofanis and his family and the hope that Christ’s cross will deliver the miracle they have been seeking was truly a precious gift and blessing!

The next day, early in the morning after Theo’s labs were drawn, the Resident came in to wake up Eleni and show her the results of Theo’s blood test. With a big smile on her face, she handed the report to Eleni which showed that Theo’s WBC was 1.6 and his Absolute Neutrophils appeared at 1,216! She told her that it was incredible that his counts were so high. She said all the doctors are shocked and extremely happy. Then the resident said, “I heard you had a big ceremony here yesterday,” inferring that the hospital staff was thinking divine intervention may have contributed to the incredible news that Theo’s new stem cells have taken over, faster and stronger than anyone ever expected. And actually, his stem cells engrafted faster than during his first transplant even!  Mid morning, Dr. Cohn came in with an entourage of residents, gave Theo a huge smile and said, “Your mom is right, you really do have super cells!”

So the next few days, Eleni and Kosta watched his counts skyrocket each day and saw his mucositis ease a bit.  But, they also watched Theofanis catch a cold. Well, he really didn’t catch a cold, but the cold symptoms surfaced. Remember, tests showed that Theofanis had the rhinovirus colonies in his sinuses, that had the potential of turning into a cold. Well, now that his stem cells came back and his immunity was restarted, his new cells discovered the nasty rhinovirus and decided to start fighting it. So, the sneezing, runny nose and fever began. Although he was on a clear path to recovery,  the hope that he would be released in time for Christmas fizzled.  

HAPPY BIRTHDAY JESUS AND HAPPY BIRTHDAY THEOFANIS!

After coming to grips with the fact that Theo would not be allowed out of the hospital, the Yianas family had to plan a Christmas and Birthday celebration unlike any other year. Kosta and Eleni were determined to make sure this Christmas was just as magical and just as happy, just in a different place.  And the way that they were going to do it was to make sure their family was together.  Fortunately, Dr. Cohn was the attending physician that week on the 6th Floor of Comer, so she gave the ok to have Theo’s sisters visit him that day. And with that approval, Eleni and Kosta broke all the rules! 

On Christmas morning, Santa delivered the Yianas family’s gifts to both Palatine and Comer Children’s Hospital. Two sets of stockings were filled with goodies, two Christmas trees were surrounded by presents, and two iPads were working hard as Kosta and Theofanis were Facetiming from Chicago and Eleni, Demetra and Sophia were Facetiming from Palatine. The family opened Christmas presents together via video. Each sibling would take their turn opening presents while the others waited anxiously to see what Santa brought them. All three kids knew that they were very, very good this past year, so they hoped that Santa would bring them everything they wanted!  It took nearly two hours to open all the gifts, which was an indication that yes, the Yianas kids were very, very good kids!

So Eleni packed up the Honeybaked ham, gathered the party supplies and balloons and with a birthday cake in hand, headed to the hospital to celebrate Christmas and Theofanis’ 7^th birthday! When they arrived at the hospital, with the help of the Tunney family, they set up a mini birthday party in the lobby of the 6^th floor of Comer. (As mentioned, the Yianases decided to break a lot of rules that day!)

Wearing a mask, Theofanis emerged from his room for the first time in over three weeks! He saw familiar, loving faces, heard them sing “Happy Birthday” to him, and even joined them in a board game. After blowing out the candles on his cake through his mask (he had to lift one side of it to get any air out), Theofanis showed off his overly-decorated hospital room (again, breaking more rules) where everyone was shocked to see the piles and piles of toys and gifts from Comer’s Child Life department and from his nurses. Plus, there were gifts from his teachers, family and friends! So to the many generous people who sent cards and gifts and texts and wishes filled with love, you helped turn a worrisome Christmas Day into a special day that was filled with smiles and laughter. 

OUR PROMISE TO FIND A CURE

As everyone recalls, the wonderful parish of St. Demetrios in Elmhurst held the Taste of Greece Fall Glendi in Theofanis' honor in late September, with the proceeds to benefit Theo and neuroblastoma research.  The church left it up to the Yianas family to decide which research program to donate to. The Yianases chose to donate to the University of Chicago neuroblastoma research program lead by Dr. Cohn. And, they chose a program specific to a new therapy that not only has proven to help children who have relapsed, but also has the potential in the future to help newly diagnosed patients who are undgeroing front-line therapy. Dr. Cohn is leading the development of an MIBG therapy room which delivers radioactive isotopes to neuroblastoma cells to kill only those cells. It is a therapy that requires children to be isolated in a lead-lined room for an entire week while radiation is continuously being delivered.   The MIBG program at the University in Chicago would be the only one in Illinois and Indiana, and one of the very few in the United States that could offer this treatment to their patients. Plus, invaluable research on MIBG therapies have the potential to lead to better and more effective treatments with less toxicity. As Theofanis’ pediatrician and aunt has said, “what if they could attach chemotherapy drugs to MIBG isotopes and deliver chemo to only the neuroblastoma cells and spare healthy cells?” It’s a brilliant idea. Those are the kinds of ideas that spur research that will one day find the desperately needed cure.

So, Theofanis asked Dr. Cohn to come to his room at 637 Comer on the day he was being discharged to home.  Dr. Cohn arrived and was surprised to see a beaming Theofanis, check in hand, announce that he wanted to donate to help children with Neuroblastoma.  She was very happy and thankful for the donation and the Yianas’ support of the MIBG therapy program which is opening in 2012.  So to everyone who attended the Glendi, donated to the Glendi, and who volunteered their time, especially those who spent endless hours planning and organizing, the Yianas family thanks you, Dr. Cohn and the researchers at the University of Chicago thank you, and Theofanis thanks you. And you all should feel proud that your efforts will help many children in the future fight this terrible disease.

DISCHARGE, DEFIANCE AND HOME

On December 30^th, when discharge day finally arrived, Kosta packed everything up, all the cards, the posters, the decorations and the Christmas tree,  and waited for Eleni to pick them up.  Dr. Cunningham had asked the Yianas family to head to the Ronald McDonald House as they did last time, but Kosta and Eleni felt that it was better to be home over the New Years holiday.  Theo would be more comfortable there and he would have less exposure to other people.  Knowing what it was like the first time around, they insisted their home was cleaner, Theo would try to begin eating, and he would be happier sleeping in his own bed and playing freely with his sisters. The doctors, now used to dealing with Kosta and Eleni’s defiance to the rules, highly recommended that they stay close to the hospital during the first few days after discharge. “We’ll drive fast if we have to come to the ER,” they told them, and they signed the discharge documents, thanked all the nurses, waved goodbye and headed home!

GETTING STRONGER EVERY DAY

He’s feeling good. He’s comfortable. He’s laughing. He’s shooting baskets. He’s jumped in the snow. He’s playing with his sisters and arguing with them too. Theo's task now is to slowly get back into his "normal" routine of eating more, tackling homework, studying with his tutor, and exercising to get his strength back.  He was off of his liquid nutrition, TPN, about a week after discharge.  He was experiencing some issues with his gastrointestinal system during his last week in the hospital, and an astute nurse pointed out to the doctors that he was going through morphine withdrawal. So, he was weaned off the narcotic while at home. His regular visits to the clinic (two per week) for a checkup and labs showed his recovery was going well and his blood counts look good. So Dr. Cunningham reduced his visits to once a week and now to every two weeks. The smiles from the doctors during Theo’s visits to the hospital also confirm Theofanis is recovering extremely well!

So, Theofanis has finally passed the half-way point of his treatment. Chemo Induction Therapy is done. Tumor resection is done. Stem Cell Transplants are done. Now, the next step is Radiation Therapy. And Eleni and Kosta need to decide what’s the safest path for their son.

How did it happen?

Still reeling from the simply unbelievable mistake the doctors made when administering more chemotherapy than necessary, the Yianas family sought to find a reason for the error.  The trust that was once unshakeable is now damaged.  Eleni and Kosta, though terribly disappointed, wanted to be sure that, going forward, they could be able to trust the doctors at the University of Chicago with their son's care and that measures would be taken to prevent another lapse in communication that could put their son in harm’s way.

How did this happen exactly?  Eleni was with Theo during the first three days of his high dose chemotherapy.  Each morning, she documented and watched the medical team hang his two chemo bags that were each infused over a period of 24 hours and the one chemo syringe injection. She asked the name, dosage, and duration of each drug, and she knew that the responses she would get would be the same as the previous day. Nothing was unusual, nor out of the ordinary. The Yianases had a copy of the protocol for the second round of the COG clinical trial specific for a Tandem Transplant. They knew that Carboplatinum, Etoposide and Melphalan were the drugs and the dosages were high. They knew that Theo would be given 3 days of one drug and 4 days of the other two. They knew that their son’s exact dosage was calculated based off his weight and some other factors. They knew there would be side effects that would eventually kick in and linger until his new stem cells could take over.

But, on the third day of chemo, after his medicine was given and the doctors and nurses left Theofanis’ room, Eleni felt nervous and uneasy. She stared at the chemo bags that were adorned with “caution” and “poison” labels. She concentrated, though on the label that captured her son’s name followed by an endless list of numbers and formulas that resembled algebraic calculations. Not fully understanding what she was reading and accepting that pharmacists speak an entirely different language, a feeling came over her. A bad feeling.  As she nervously rummaged through Theo’s Stem Cell Transplant Binder which contained every document pertaining to her son’s treatment, Theofanis noticed her changed demeanor. And when Eleni dragged her 10-lb binder to his IV pole and held it up to his chemo bag, he asked what she was doing. “Just double-checking something, sweetheart.”  She pulled up the protocol and read the pharmaceutical calculation guidelines that Theo was on. She didn’t understand what she was reading. She looked at the chemo bags. She looked at the protocol document. She was looking, but wasn’t sure what she was looking for. Her bad feeling did not go away. Then, Eleni pulled out her laptop, searched her files, and located the 200-page pdf file of the complete Children’s Oncology Group Neuroblastoma Treatment Protocol. She searched for the treatment protocol for children undergoing a Single Stem Cell Transplant. In other words, she searched the protocol that her child was NOT on.  Filtering through the pharmaceutical guidelines for the variable dosing factors (such as adjustments for body mass vs. kidney function loss vs. other possible factors for variance), Eleni found the page of the protocol that she believed her son would be on IF he were only doing one transplant. She held her laptop up to Theo’s IV pole, and she saw every single number jump off of her computer screen and onto the labels of her son’s chemo bags. Every single number on those bags matched the protocol that her son was NOT on. She was punched in the stomach with sickness and stabbed in the heart with panic.  The numbers were all higher.

Eleni called for then nurse and then called Kosta, who was on his way to Comer to “switch” shifts with her. There’s something wrong. There’s something terribly wrong, she told him. Kosta arrived in Theo's room to see Eleni very worried and hurriedly double-checking the protocol worksheets.  A few moments earlier, Eleni was in the pressurized entry way of Theo’s room with the nurse reviewing the formal orders in Comer’s computer system. The nurse insisted Theo was getting the right dose because it was exactly what was written in the orders. Nonetheless, she contacted Reggie, the Pharmacist, who also confirmed he mixed that exact medicine that’s written in the orders. But, when Eleni showed the nurse the COG protocol on her laptop, the nurse stared at the screen, looked at Eleni, and then immediately paged both Dr. Cunningham, Dr. Cohn and the attending, Dr. Uma. “I hope you all think I’m crazy and am freaking out for no reason,” she told the nurse. “I pray to God you all think I’m crazy.” The nurse looked at her, worriedly.

“Get Dr. Cohn, get Dr. Cunningham, get Reggie, get them here now!” she insisted.  “The orders in the computer are wrong! You are overdosing my child!”

Kosta and Eleni demanded that doctors immediately ascertain whether or not the dosage was, in fact, incorrect.  Dr. Cunningham, nor Dr. Cohn were in the building. The other doctors, nurses and pharmacists gathered behind closed doors of a conference room.  Eleni and Kosta sat patiently and calmly in Theo’s room because moments earlier, Theo asked, “What’s going on?” And there was no way they were going to allow their son to worry about anything.  After a short time that felt like an eternity, Reggie came into Theo’s room. Eleni and Kosta stood up, and simply asked, “Is it wrong?” And Reggie looked them in the eyes and said, “Yes, it’s wrong.” He confirmed that Theofanis was overdosed on high dose chemotherapy.

“Then why aren’t you stopping that pump right now?”

“It’s too dangerous to stop it now,” he said.

Here’s the plan…the two drugs that were scheduled for the fourth day will be amended to about half the prescription so that cumulatively he will get the correct total dosage.  However, the Melphalan had already been given in full.  There was no remedy for this.  Theo received about thirty percent more Melphalan than he was supposed to.

As the reality of the erroneous chemotherapy infusion began to be realized, Eleni and Kosta were gripped with fear for their son -- virtually the same feeling they felt when Theofanis was first diagnosed in early May.  How could this happen and why?  Who could have made such a careless error?  But most importantly, what does this mean? What will happen to Theofanis, short-term and long-term?

Dr. Cunningham, who is directly overseeing Theofanis’ care during transplant, arrived shortly thereafter, and told Eleni and Kosta that he took full responsibility for the mistake. But, before confirming that the original chemotherapy orders were wrong, he said, “Theo was not poisoned.” He assured that Theo was going to be ok.  “But, thank goodness you caught the mistake, Mrs. Yianas.” What of the Melphalan, then, Dr. Cunningham?  He proceeded to tell Mom and Dad that Melphalan is highly effective at killing neuroblastoma cells.  It also hits the bone marrow hard and suppresses white blood cell production. So,  Theo's recovery will take longer than expected, and the short-term side effects included more aggravated mucositis.  He said there were no long-term side effects from this drug. Eleni and Kosta listened to Dr. Cunningham, but could no longer trust a word he said.

Yes, trust was gone, and Dr. Cunningham knew it.

“Do you know how we feel right now?” they asked him. Their fear quickly shifted to anger and determination to find answers.   As the Section Chief of Oncology, he took full responsibility.  He admitted that he made the mistake. But, how did this happen?  Who was really responsible? An investigation began, with all the formalities associated when overdosing a child. Root cause needs to be identified, reports need to be written, reviews by committees, etc.  Plus, how does this affect Theo’s status with the Children’s Oncology group now that the protocol was violated? Is he off trial? The one thing though that the Yianas’ knew for a fact was that the “failsafe” system of multiple checkpoints and verification that each chemotherapy order should follow, failed. It supposedly failed for the first time…with their son. “You are a world-class institution. How do you allow this to happen?” Kosta demanded.  No one had a response for him.

Over the next few days, Dr. Cunningham, Dr. Cohn, and Dr. Panigrahi, along with the residents and other fellows received sharp questions and follow-up questions on everything they were doing.  They were reminded that the trust that the Yianas’ had in them had been extensively damaged, and this was not the first time there was a communication issue amongst their ranks.  Yet, this certainly was the most blatant, and was close to being disastrous. As the Yianases continued to experience different emotions, they quickly realized that the most important thing they had to do was not allow Theo to see or sense any mistrust with the hospital, doctors or staff. So, Eleni and Kosta put on happy, optimistic faces each time the doctors came in.

Then, on the Day of Theo’s Stem Cell Rescue, Day Zero, they requested a sit-down meeting with Dr. Cunningham and Dr. Cohn. A meeting where the Yianases asked these doctors if they are willing to work with them on rebuilding trust. The Yianases took the following position:

1. The first step in regaining trust is having access to information. The Yianases asked for full disclosure: the formal investigation report, plus documentation of the medicines Theofanis was given with the dosages he was given.
2. For the remainder of Theo’s treatment, they asked that someone sit down with them and highlight the full COG protocol and identify every area of treatment and dosing, so that they could double-check what every doctor or nurse does.
3. They demanded that no one criticize or complain that they are asking too many questions.  In the past, Eleni and Kosta were told that some folks on the hospital staff thought they asked too many direct questions. Some people didn’t like being watched while they were drawing their son’s blood or while changing their son’s dressing or while changing and cleaning his IV lines. In the past, Eleni and Kosta sensed how some doctors or staff would be annoyed by their redundant questions.  

Dr. Cunningham and Dr. Cohn fully agreed to their requests. And most importantly, they agreed that Theo’s health and recovery is everyone’s top priority.

Then, Eleni asked each of the doctors: “What does your gut tell you about the effects that this mistake will have on Theo?” Dr. Cohn said, “Thank goodness you caught the mistake.” In early clinical trials, children were given the full dosages of the three chemotherapies and it proved to be highly toxic to the children. Then she said something that they heard before: Melphalan is highly effective against Neuroblastoma. That little extra dose may help.  Then, Dr. Cunningham said that he too thinks that the Melphalan will specifically target Neuroblastoma. And he said short-term, Theo’s bone marrow will take longer to recover.

Eleni ended the meeting by telling them that she and Kosta don’t want their relationship or their discussions with them to be argumentative or confrontational. The doctors expressed their appreciation with that. And, she told them both, “I’m kicking myself for not double-checking the protocol on the first day.” Then, Dr. Cohn shook her head and said, “I’m kicking myself.” You see, Dr. Cohn, Theofanis’ primary oncologist and the hospital’s top Neuroblastoma expert, steps away and turns primary care over to Dr. Cunningham and the Stem Cell Transplant team during this phase of treatment. Dr. Cohn did not review the orders. The Yianas’ believe that if she saw the orders, she would have caught the error. And they think she believes the same thing.   

So, what happened? The official investigation summary and report will be complete by end of January. Eleni and Dean were promised copies of it. Apparently, templates for this clinical trial were created and entered into Comer’s computer system a year ago. All current orders are drafted using these templates.  (By the way, these templates were created in order to prevent a mistake like this from ever happening.)  And because Theofanis was the first child at Comer to move forward with two stem cell transplants, the template was used for the first time with him. So, who created the incorrect templates? Dr. Cunningham said he did.

The doctors are sorry.  While at first, it seemed they were frantic and defensive, Kosta and Eleni do know they are sincere in their apologies. What happened was not good for Theo, nor them. Both Dr. Cohn and Dr. Cunningham conveyed that this never happened to either of them before. They had to admit error to the Children’s Oncology Group and to their peers.  Their reputations have been affected. But more so, their patient was placed in harm’s way, and for that, they are very, very sorry.

So, Day Zero of Theo’s second Stem Cell Rescue began with a new understanding of the care and attention the Yianas Family expects their son must receive.  It began with commitment from the oncology team that they will be forthcoming with information. And it began with uncertainty on Theo’s short term recovery. You see, his counts dropped to zero and the signs of side-effects began to surface.