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: - The tumor behind his cheekbone is very close to his eye.
- The tumor on his left ulna (elbow) is on his growth plate.
- 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 1st, Theo had his first proton beam radiation treatment. Told it would take longer the 1st 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!
