Friday, May 4, 2012

Moving Forward with Treatment - Immunotherapy #3

Seeing slow but positive signs of their son's recovery, and with the mixed recommendations from the world's top neuroblastoma experts, Eleni and Kosta thought long and hard on whether to move forward with Theo's Immunotherapy treatments.

After the severe and serious neurological effects caused by the second round of Immunotherapy, Dr. Cohn followed Theofanis' recovery closely. She was also consulting with her international colleagues on whether they believe Theo should continue with therapy or stop treatment all together. There was consensus on stopping the IL-2. That drug is clearly too dangerous for him. And, there was consensus that if Theo were to proceed, he should do so at only 1/2 dose of Ch14.18 antibody. But should Theo attempt to continue at all? No expert could deliver an answer to the Yianases.

"In my heart of hearts, I think he's cured," said Dr. Cohn. "But what if I'm wrong?" And with that statement, Eleni and Kosta agonized. They were hesitant to say, "let's move forward," because they feared the severity of the side-effects their son could be faced to battle. But they reverted  back to their original objective to do everything they can to cure their son of cancer and prevent relapse. After all, that's why they agreed to two stem cell transplants. That's why they sought proton beam therapy. That's why they placed their son under Dr. Cohn's care.

So, with the words, "What if I'm wrong," ringing in their ears, Eleni and Kosta explained to Theofanis that he would be going to the hospital again for treatment. He would have three more treatments of Ch12.14 at half dose.

Immunotherapy Treatment #3 - Off COG protocol, but praying that 1/2 dose will benefit him in his fight towards his complete cure.

On Sunday April 22nd, after the Greek Independence Day Parade on Halsted Street in Chicago, the Yianas Family went out to an early dinner. They then went home and packed up Theofanis' suitcase for a week-long stay at Comer Children's Hospital. After a tearful good-bye, Eleni and Theofanis left for the hospital. He cried that he didn't want to go, and his sisters cried as they waved goodbye. Theo cried at the hospital, too, saying that he misses home, his sisters and his daddy. That night, Eleni slept in Theo's hospital bed, holding her son close to comfort him. She did that for several nights.

On Monday morning, the Ch14.18 antibody was hung on his IV pole, his pre-meds were started, and Dr. Cohn came in to check on him and confirmed the 1/2 dose treatment plan. Kosta arrived soon after the infusion started. And, for the remainder of the week, Kosta and Eleni watched for signs of any unusual reaction. Everyone was watching him very closely.

And, with God's grace, Theofanis was able to tolerate the antibody treatment with minimal side effects. The tingling he had in his hands spread to his arms and he had slight but quick rashes. But he was able to avoid a fever and thus antibiotics; his pain was controllable at a low morphine continuous infusion; his blood pressure and vitals were stable; and his itching was not completely unbearable. He also was able to do some daily exercises that were recommended by the pediatric physical therapy team. Overall, he did well. So, on Friday morning, Theofanis was discharged first thing in the morning, as planned. He and Kosta went home.

Theo still had signs of nerve issues caused by the chimeric antibody, and it took several days to begin seeing improvement, but overall and in comparison to his last treatment, he did great, thank God.

His older sister, Demetra, turned nine on April 26th while he and Kosta were in the hospital. Deme still had her balloons on her door as is the tradition with the Yianas kids, yet Daddy and Theofanis were on a screen via FaceTime singing Happy Birthday to her. Thank goodness for technology! Although the Yianases had celebrated Deme's birthday the weekend before, it is always special to hug your daughter and sister in person. Happy Ninth Birthday, Deme!

So over the next week, the Yianases started experiencing some "normal" family activities. All three kids went to school, Kosta began coaching Theofanis' baseball team as the season began, and Eleni attended a business meeting in Orlando. There were Open Houses to go to, practices to go to, school projects to complete, and a schedule to follow. Aside from making sure to keep up with the accutane and GM-CSF injections (which daddy has taken extreme care in making sure it's given as planned) and making sure there are daily signs that Theo's strength is returning, the Yianases were breathing a little easier over their decision to move forward with treatment.

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