Monday, July 2, 2012

Immunotherapy #5 is DONE and Theo Is Home!!!!!


He spent 120 nights in the hospital over the course of his cancer treatment. But on Friday, June 22nd, Theofanis bade a final farewell to the 6th Floor of Comer Children's Hospital, and we all are praying that it will be forever!

Plus, a surprise homecoming that he did not expect...


THEO'S LAST HOSPITAL STAY MARKED THE END OF ANTIBODY TREATMENT!

On Father's Day, Sunday June 19th, after a fun-filled evening at the Saint Demetrios Summer Greek Festival, Theofanis was admitted to Comer for his fifth round of Ch14.18 Antibody treatment. Exhausted and dizzy from the spinning carnival rides he insisted on going on, he arrived at the hospital accompanied by his mom, dad and two sisters Deme and Sophia. (His baby sister Christina is still in the NICU at St. Alexius, working on eating and growing. They visited her after church that morning and even got a chance to hold her!)

THE SPOT

Theo was escorted to room 602, which happened to be the very first room he stayed in when he started this journey in 2011. The family unpacked the Icons that have accompanied Theofanis at every chemo infusion, surgery, transplant and antibody infusion and set them in their usual place on the desk facing his bed. They then unpacked his clothes, family photos, books, toys and a Star Wars Lego set to keep him occupied during his stay. They ate a late dinner together, which they brought from the festival, and then it was time for Daddy and the girls to head home. Mommy would be staying with Theo during the first few days of the infusion which would start at 10 am promptly the next morning. 

First thing on Monday, Theo had to make a big decision...how should he decorate his room for the last time? Eleni realized the significance of this hospital visit when she heard her son ask to draw "Gold Ribbons" in honor of finding a cure for childhood cancer. Already hooked up to the IV pole and pumps, he grabbed the window markers and began to draw and write, "I'm a cancer survivor." For the first time, Theo acknowledged that he is in remission. He also dedicated one window to the incredible staff of Comer 6, whom he thanked for the care that they've given him throughout the 13+ months of his treatment.

Theofanis' final round of ch14.18 antibodies would once again be given at 1/2 dose. Dr. Cohn, who was attending and speaking at a world-wide Neuroblastoma conference, would be in Toronto for the week. It always made Kosta and Eleni nervous when she was out of town during his treatments, especially knowing that Theo's response to the antibodies could be completely unpredictable. But by now, the drill was routine: his premeds of bendadryl and tylenol were started, the PCA pump with morphine was set, and his bag of part human/part mouse chimeric antibodies was hung and would run over a period of 10 hours each day. The nurses monitored his blood pressure and vitals every 15 minutes and then tapered down to every hour. That was the drill, and this time--this final time--Theofanis' body cooperated beautifully. The week was completely uneventful. Yes, he would get extremely tired by the end of each day, but that was expected. And besides, how could this child not be tired after all that he has gone through?

So throughout the week, the challenge was purely around entertainment. Mom and dad were at Theo's side accomodating his "let's play a game" requests, his sisters played and watched movies with him, his nurses played wii with him, and he even had a "playdate" with his best buddy, Pantelis, who spent an entire day at Comer. He had a visit from the Sox and Cubs Umpires who were escorted by Southpaw (the Sox mascot for all us Northsiders!) He also updated his strand of Courage Beads to 897! He also hosted a pizza party on Thursday evening for all the nurses on Comer 6!

Theofanis was officially discharged on Friday morning. But before he left the hospital, he made his own "Rounds." As he walked around the floor to say goodbye and give hugs to his nurses, he passed out Gold Ribbon Childhood Cancer cookies to the wonderful team that took such good care of him over the past 13+ months. And then he made his way to the Clinic to pass out cookies to Dr. Cunningham and his doctors, more nurses, Amy (his Child Life Specialist), and his care team. 

And that's how Theofanis said "so long" to overnight stays at Comer! Theo did say that he will miss many of the nurses, though. "We will visit. Only visit," said mom and dad.

WITH FAITH, LOVE AND PRAYER HE WILL WIN!

So, Theofanis headed home to find a huge surprise...a celebration was waiting for him!
As the car turned onto Morrison Avenue, Theofanis noticed the street lined with cars, a huge bounce house in his front yard, and dozens of his friends waving signs and cheering. "Did you know about this?" he asked his mom and dad. Kosta and Eleni had predicted that Theofanis would either be ecstatic or really mad about being surprised with a "Welcome Home" party. So when they looked toward the back seat and saw their son's eyes wide open staring out the window, and when they saw the immense smile on his face, they knew that Theo was very, very, very happy!

It was an incredible sight for Eleni and Kosta to witness...their driveway filled with friends and family who love and care about their son, welcoming him home after a year and a month of hospitalizations...their son walking into a crowd of hugs and kisses...their home filled with happiness!

There was silly string flying through the air and colorful posters waving to an fro. And, speaking of fro's, kids were wearing crazy wigs, had colorful streaks in their hair, and painted their faces in celebration of the one year anniversary of "The Great Shave-Off!" where many of the same faces came to cut off their locks in support of Theo when he lost his hair to chemotherapy.


There was laughter and lemonade! Balloons and bouncing kids! Food and cake! What started as a small and quick get-together to cheer the end of Theofanis' in-hospital cancer treatments, turned out to be a huge celebration! So thank you to everyone who came, to everyone who sent their love, to everyone who has prayed for this day to come, and to everyone who has been alongside us during this long, long journey! And thank you to Theia Galinda and Theia Teja who helped pull off this fantastic surprise!

MOVING FORWARD

August will mark the official end of Theofanis' treatment to rid Neuroblastoma from his body. He continues to take Acutane at home until August 5th. At that time, he will undergo a battery of scans and tests to once again confirm the status of his disease.
With God's mercy and strength, we ask everyone to pray that his scans will be clean, confirm that he is in true remission, and that there will be no evidence of disease. Our Lord, Panayitsa, and all the Saints in heaven, please let there be no evidence of disease...now and ever! Please protect Theofanis now and always!

Here are some fun photos from Theofanis' Welcome Home Party...




1 comment:

  1. Its been quite a journey and we are so glad that we could be a part of it. The ups, the downs, the scares and the successes.

    I feel very blessed and excited to be able to leave a comment on a post like the one just written above.

    It was always the vision to someday be able to do so and now its a reality. How cool is that?

    Frederick "Theofanis" Chang & Family

    ReplyDelete