IN GOD'S HANDS

Relief, surprise, and fear fell upon the Yianas Family during these last very emotional seven days leading up to Theofanis' admission for his Stem Cell Transplant.  And, with an overload of test results and information that they needed to process, Eleni and Kosta had to make the most difficult decision of their, their son's and their daughters' lives. 

Since his discharge from Comer after being neutropenic from his last round of chemo, Theofanis slowly recovered his strength, regained some stamina, and started feeling more like himself with each passing day. The side effects from Chemo #6 were by far the worst he's had to deal with since diagnosis. Coupled with post-surgical pain and healing, he lost a significant amount of weight, too. There was a period where his parents contacted their nurse to request that Theo be placed on a TPN (IV nutrition), but when they found out that he would have to be re-admitted to the hospital for at least 24 hours, they retracted their request and doubled-down on forcing Theo to eat. They even bribed Theofanis to eat a banana in exchange for a $100 bill. It took nearly 30 minutes, but he ate it! With Carnation Instant Breakfast shakes, Theofanis regained about 4 of the 10 pounds he had lost. 

So with Induction Therapy over and Stem Cell Transplant and Isolation on the horizon, the Yianas family tried to get in a few Fall family activities that created a sense of normalcy for the family. They visited a pumpkin patch with cousins, enjoyed some carnival rides, and put in a round of indoor glow golf. They hung out with friends and family and celebrated Fall with the Tunney and Kics families, which has become a tradition over the past several years. Theofanis also served in the Altar at church and even was the youngest altar boy to slice the arto (blessed bread).

But the most exciting highlight of the past couple of weeks was his last soccer game of the season. He joined his team, the Blue Sharks, at an indoor field on Saturday. Theo hasn't practiced or played much this year (only 1/2 the games), and actually per the strong suggestions of his oncologists, shouldn't have played at all.  It was evident Theo was tired. He would run and quickly get tired. He'd raise his hand after a few minutes of field play asking his coaches for a break.  Although he ran much slower than usual, what didn't slow down was his passion to win. (Remember, in the first blog posting you learned that Theofanis likes to win.) So, with only minutes left remaining in the game, Theo put on his game face and kicked in the winning goal for his team!  SCORE! 2 - 1. He raised both his arms over his head, smiled and walked off the field. The crowd erupted in cheers and applause. Emotions were rampant. This child fighting cancer, who has undgergone six rounds of chemotherapy, a major surgery, and has tubes hanging from his chest, just got back a bit of his childhood. It was an incredible moment. And, it was a reminder for Kosta and Eleni that their son can do anything!

THE SPOT

Theofanis was scheduled for a full and complete battery of tests, scans and work-ups in preparation for his next phase of treatment in his battle against Neuroblastoma.  And, the results of these tests would dictate the next steps in his journey.  So over a period of two days, Theofanis underwent MIBG scans, CAT scans, blood tests, urine tests, organ function tests, scans for viruses, bacteria and fungus infections, an EKG, an Echo, an audiogram, a bone age test and a bone marrow biopsy. These tests would show if the cancer is gone or decreasing or spreading. And, these tests would show if he's ready to move on to the next phase of the COG (Children's Oncology Group) treatment protocol, which is Stem Cell Transplant. 

There was little doubt that the Theo's test results would not show improvement. His resected primary tumor had matured into benign ganglioneuroma cells.  The pathology report proved that the cancer was dying off. But, with cancer, there is always doubt and uncertainty. And as we all know, Neuroblastoma is unpredictable.  So, late last week, Dr. Cohn called the Yianas' with test results as they were coming in.  The MIBG scan (scan that lights up neuroblastoma cells) showed no uptake in the abdomen. The area where his primary tumor resided showed no Neuroblastoma cells. This was great news.  The MIBG also showed a significant decrease in uptake in the left elbow, the metastatic site where Theo's cancer was originally discovered. Dr. Cohn said it lit up just a "teeny weeny."  This was also good news. It would have been better if it was completely gone, but it's still news that the Yianas' were happy to hear. The CT scan of the abdomen also showed that there was no tumor left in the left adrena area. It showed some fluid in the area of the resected tumor which is consistent with surgery. The bone marrow biopsy was still pending. 

Then, Dr. Cohn proceeded to tell them that they found a "surprise".  She told Eleni and Kosta that the CT of his sinuses showed a tumor behind his left cheek bone that is 15 mm X 10mm. This tumor was undetected in any previous scans. It did not light up on any of the three MIBG scans Theo had. It did not show up on the intial bone scan either. Dr. Cohn proceeded to explain that tumors in the head are usually visible or show symptomatic signs. And since Theo had no pain, a CT of his head was never done before. Basically, they prefer to not radiate the head or brain if they don't have to. With this news of the newly discovered mass came the questions of (1) is it new growth or was it there from the beginning (2) are there active or differentiated cells and (3) how should it be treated? Dr. Cohn told them that she would need to consult with the radiologist, and ENT and other colleagues and would call them the following day. When Kosta and Eleni hung up the phone, Theofanis immediately asked, "What did Dr. Cohn say?" They told him that the cancer in his belly is gone and that only a teeny bit showed up in his arm. But they also told him that another tumor showed up on his cheek bone that they didn't see before and that Dr. Cohn thinks it was there from the start. Then, once again, Kosta and Eleni were reminded of how incredibly smart their little boy is. He said, "Why didn't they scan my head in the first place?" It was more a statement than a question. His parents and even Dr. Cohn agreed, that Theofanis was right.

So with this news, fear immediately settled in. It was difficult to accept the concept of another tumor having invaded Theofanis' body. And the fact that the tumor is so close to their son's brain was crippling for Kosta and Eleni. The next day, when Dr. Cohn called them with her recommended plan, she commented that we should all look at this as a blessing that it was found now, because this tiny tumor could have been the sight of a future recurrence.  And recurrence with Neuroblastoma is simply NOT GOOD. She expressed her concern that conducting a needle biospy on the cheek bone will not give us 100% guarantee that there are no active cancer cells. She consulted with radiologists, surgeons, oncologists and the Tumor Board at U of C. Firstly, there is agreement that the tumor most likely was there at initial diagnosis, but was not picked up by MIBG. (Some neuroblastomas are not visible on MIBG). Or, a theory that Eleni and Kosta have is that the cells were already differentiated or dead. Dr. Cohn said that it is highly unlikely that a new tumor would grow on the same side of the body where there is significant decrease in cancer cells (as shown in primary tumor and elbow). Still baffled by this newly discovered tumor, Eleni asked Dr. Cohn if she's had other patients who have experienced this situation. Dr. Cohn told her that she has not seen this before. She also told her that Theo has been different from the very beginning. Another confirmation that Theofanis is truly special. 

So, Dr. Cohn's plan is to be conservative and treat the tumor by either radiation or surgical resection. The ENT surgeon felt that surgery through the sinuses would be too difficult and there's no guarantee that the entire tumor can be removed. And it would be highly probable that the area would need to be radiated anyway. The Radiologist felt that he could radiate the tumor by going in from the sides of his head with the objective of staying clear of the brain. He would also radiate both cheekbones to avoid any future asymmetrical bone growth.  Eleni and Kosta still have many questions and want to consider all options, including proton therapy which delivers less scatter of radiation. But, in the meantime, Dr. Cohn's plan would be to proceed with the Stem Cell Transplant and treat his abdomen, elbow and cheek bone with radiation.

But even late last week, the clear plan of action was still not completely set. Theofanis is participating in a clinical trial. (Most children who are battling childhood cancers are on clinical trials.) This particular one, COG  ANBL0532: Phase III Randomized Trial of Single vs Tandem Myeloablative Consolidation Therapy for High Risk Neuroblastoma, is a current clinical trial that will either prove or disprove the belief that two stem cell transplants will reduce relapse in high risk Neuroblastoma patients. Patients who participate in this trial will be either randomized to either one or two stem cell transplants. Patients must have completed the 6 rounds of chemo, tumor resection, and show decrease in disease in order to participate in the trial. So, if the bone marrow biopsy result continued to show that it is still 100% clear of Neuroblastoma, then Theofanis' name would be put into a computer, and he would have a 50/50 chance of getting either one or two transplants. 

When Kosta and Eleni signed the consent form, they decided to do so with the strong belief that their son's cure is in God's hands. If Theofanis is randomized to one, it's God's will. If he's randomized to two, it's God's will. They do not know for certain which course of treatment is better for his long-term survival, and they do not know what effects additional treatment and toxicity will pose in the future. But what they are certain of is that they must stop this cancer now and do everything they can so that there is no recurrence.  They must do everything that they can to save their son's life.  And they must do it with God's strength and guidance.

So on Monday afternoon, the day before their scheduled admission for the Stem Cell Transplant, Dr. Cohn called and said that Theo's bone marrow was 100% clear. Then, her next call would be news of the randomization. At 5:45 pm, as Eleni pulled into the driveway of her home, Dr. Cohn called with the news that Theo was randomized to a tandem transplant. Not knowing how to react, Eleni was silent. Dr. Cohn told her to think about it. There was still time to pull out of the trial. She also told her she would send a paper that highlighted results of a separate tandem trial conducted by the Children's Hospital of Philadelphia and Dana Farber (Harvard). She said that there is a belief by researchers that two transplants show better survival rates than one transplant. it's not proven, though. Dr. Cohn told her that whatever she and Kosta decide, she will fully support them. As Eleni got out of the car, Kosta emerged from the garage to take Deme to volleyball class. Eleni looked at Kosta and held up two fingers. He stood still and silent. Neither said a word. They both had to think. They were thinking all night long....crying and thinking....crying, thinking and praying....

Theofanis is the first child in this study to do a tandem transplant at Comer. His transplant doctor, Dr. Cunningham (who came to the Glendi) has done multiple transplants before at St. Jude's Children's Hospital. After a long consultation with him the previous week, Eleni and Kosta felt that their son is in good hands. They have and continue to believe that they have put their son in the care of the country's top experts in Neuroblastoma and childhood cancer. Stem cell transplants pose risks. Doing two increases those risks. Eleni and Kosta have a natural concern that Theofanis would be the first child at Comer to do this tandem transplant. The drugs and dosage are different from the standard single stem cell transplant protocol, so Theofanis can not do one and then decide not to do the other.  If they agree to do one, there is no turning back. There are no guarantees that doing two transplants are better. But, many people believe that it is. Doing two stem cell transplants adds an additional 6 weeks of isolation and extends the length of his overall treament.  He may not be home for Christmas. He may have to celebrate his birthday in the hospital, apart from his sisters. These are just a few of the million thoughts that ran through their minds as they looked to make a decision on what to do. But, the one thing was crystal clear for them. If they made the decision to decline the two transplants and just do one, and if the cancer were to come back, Eleni and Kosta would hate themselves forever knowing that they had the chance to attack it with everything modern medicine could offer. So Eleni and Kosta made the decision to place their faith in God that He will heal their son with the path he was randomly picked for...two stem cell transplants.

The morning of Tuesday, October 18th, Theofanis and his sisters gave their good-bye hugs to each other as they set off for school.  In the afternoon, Theo was admitted to Comer Children's Hospital. On Wednesday, October 19th, Theofanis began his tandem stem cell transplant journey. 

The You Tube link below will take you to a video clip of Theofanis' room where he'll be getting high dose chemotherapy, where he'll be receiving back his own "super" stem cells, where he'll be spending the next four weeks in isolation, where he'll be fighting off fevers and infection, and where he'll essentially undergo a rebirth of all his cells!

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