He's Dancing in the Hospital :)

Tuesday, May 10^th:

Yesterday, our whole family went to the hospital.  Theofanis introduced his sisters Demetra and Sophia to his medical team and showed them around the hospital.  His sisters were a great support as he completed his first round of scans.  They played Monopoly, watched a movie, and got a few goodies along the way. There was also a lot of laughter and chuckles throughout the day, especially when Theofanis did his crazy hospital gown dance while waiting for his EKG.

THE SPOT

We received confirmation that his cancer is stage IV.  We were told that he has a very "tricky" cancer. The CAT scan identified a golf ball size mass on his adrenal (where neuroblastoma typically resonates). We believe that his is the primary tumor. The CAT scan also told us that his organs look good.  The bone scan results came out great, too. No tumors were found besides the metastatic tumor by his elbow. The MIBG scan, which lights up any neuroblastoma tumors 1 cm in size and larger, identified only one area of neuroblastoma in his body…his elbow.  The tumor in his abdomen did NOT light up.  Our doctors believe that this tumor is dead or dying. Usually, when a neuroblastoma tumor dies, it’s because it’s growing so fast that it runs out of blood and can no longer sustain itself.  Theofanis’ tumor is small and we’re not sure why it died.  

Even though this all seems like decent news, we know the cancer has spread because we know it’s spread to the bone. Now we need to find where the neuroblastoma “sick” cells are in his body.  He still needs the bone and bone marrow biopsy to find this out.  This is done through surgery. And, his adrenal (dead tumor) needs to be removed. We decided to schedule his surgery next week and then begin his treatment to shrink his tumors and kill every single neuroblastoma cell in his body. It will take a year, but he will WIN!

So, Theofanis is going to have a normal week this week!  He went to school today, and his teacher Mrs. Patty sent us a note that read:

“He was soooo happy to be in school today. He loved all the work he did and commented that he had to finish all his work he missed yesterday! He was very at ease being here. He spoke about how this was his last week here to the class briefly and that he would miss next week because of his surgery. He told the children that he would contact them through skype..... I told him he can email us whenever he wants and feels up to it or even send us a letter, we will do the same. I let him share this information because I wanted him to share his feelings with us.”

And his parents, with the guidance of so many dear, dear friends, have started researching and seeking more information on neuroblastoma, specialists, and connecting us with families who have gone through battle with this disease. We are meeting with Dr. Susan Cohen, the top Neuroblastoma specialist in the country Thursday morning. Our current oncologist suggested we seek her opinion as well. It’s comforting to know that our children’s doctors collaborate with each other and work together to put our children’s health and future above all else.

WITH LOVE AND FAITH HE WILL WIN

Father Andrew has planned a Paraklisis Service for Theofanis this coming Friday at 2:00 pm in our main church of Saint Demetrios.Theofanis'  family, friends, schoolmates from kindergarten, first grade and second grade, along with his teachers and parents of Pythagoras Children's Academy and our community will attend the service. We would love it if you are able to join us in this special church service where we will all pray for our brave Theofanis together.