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.