Tuesday, May 10, 2011

He's Dancing in the Hospital :)

Tuesday, May 10th:

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.

8 comments:

  1. The tumor is dead because its not supposed to be there and lot's of people are fighting to show everyone that! Friends, Family, Theo's body and spirit, and most importantly God.

    I pray that there are going to be more signs like this that show us exactly what I am talking about

    Please send our love to Demetra and Sophia. Tell them I think they have such beautiful names! Thank them for me for being strong and supporting their brother.

    All Our Love,

    Frederick Chang & Family

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  2. I am Frederick Chang's son and am wishing to help and show my support for Theo. I am the vice president of the Key Club at my school and have pitched to the entire board to hold a fundraiser supporting Theo. Our goal has become to raise enough money to buy Theo a large present. I was wondering what kind of gift would make Theo happy. We still have to hold the fundraiser, which will be later this month, but we would like a goal before hand. Please e-mail me any suggestions on what he would enjoy at cardoza.travis@gmail.com. I hope he gets better and am praying for him.

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  3. Being his loving dance teacher of 3 years, I am happy to know that he is dancing in the hospital :). I know Theofani to be a smart and very STRONG child, who's always in such good spirits. This will not bring him down, and he will conquer this! My prayers are with him, and if there is anything I, or my father who is a physician can do for him, just name it. We are here for anything. With Faith and Love, Jenny Melahoures- jmelas1@aol.com, or jmelas2@gmail.com

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  4. We will definitely be at the Paraklesis Service on Friday to pray together as one family of God.

    We love you, Theofanis! Keep up the dancing (and show your nurses how well K. Jenny taught you how to Greek dance)! OPAA! :)

    Father Andrew, Presbytera Dimitra Georganas & Family

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  5. Theofanis had a great day at school today. It was so comforting to see him working, laughing and playing with his friends as any 6 year old should be. Eleni I truely admire your strength and Theofanis courage. He is a very special little boy who will win. He has always exceeded our expectations and I'm sure he will once again. My family and I have Theofanis and your entire family in our thoughts and prayers.
    With love,
    Dina Jason & Family

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  6. It was so nice seeing the video! It was great hearing Eleni's voice and Dean's. Dean, you sound so strong in your voice. I know you probably do not feel that way inside, so thank you for being strong for your family!

    If you were to close your eyes and listen to the video, you would not know the circumstances of what was going on. You would just think it was a family doing family things. Interacting, laughing, a little bit of discipline. Dean saying "that's enough" and later saying no to the kid's request of seeing the video. I loved how, just like regular kids, they reply "PLeeeeaaaasssse" to get him to change his mind.

    The girls look beautiful too.

    Andrea made an observation on the video. She said that you can tell by watching it that kids don't dwell on the negative like adults. They can still move on and have fun and be positive. There is a lesson in that video for us adults!

    Also, Is Kosta Dean's Greek name? I want a Greek name. Maybe Theo can give me one?

    All Our Love,

    Frederick, Andrea, Travis (Rena too)

    PS. Theo looks just like Travis when he was young. Travis even thinks so!

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  7. I know all would agree with me that I cannot wait for this to be over. I would gladly give up a year of aging to fast forward to a year from now so that we can watch Theofanin in person dancing at the PCA end-of-year show instead of the hospital. Why can't it be so?! I told my kids yesterday evening and they were very saddened, especially Dimitri since they played together last year at PCA. I could not console him at all! We agreed to say a special prayer just for Theofani at the and of our evening prayers: "Theouli please make Theofani better" So that evening we finished our prayers and I began to tuck them in... Dimitri says "mom aren't you forgetting something?" Being tired and wanting to simply end the evening is snapped "What is it now Dimitri?!" He said "Our special prayer..." I was so mad at myself for forgetting and having to fight the tears we said in unison our special prayer. I kissed my babies goodnight and prayed that God heard us. I promised myself I would never forget our special prayer again and will continue to say it for as long as it takes.

    You are always on our minds and know that all will be ok!

    All our love,

    Arry, Elaine, Pano, Dimitri, and Nevi (who by the way I think has a crush on Theofani ;)

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  8. Dear Yiannas Family,
    We are so thankful to have met such a warm family last year for our sons to play baseball together, and speak Greek!. Coach Dean I knew you were someone special when you were introduced as our coach and for this year again. My Dean was so excited to play with Theo! (My husbands name is Theofani too! Love it! Theo is an awesome kid! I know that with all these lovely prayers and Gods strength he will help Theo overcome this only to make him stronger! My heart goes out to you and your family!! Our thoughts and prayers are with Theo and your family! The Rokkas Family

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