COURAGE

Chemo Cycle #1 is DONE!!!!!!

Theofanis spent five days at Comer Children's Hospital at the U of C for his first cycle of Chemotherapy.  He was in room 602.  He met a lot of folks---so many in fact, that neither he, nor mom, nor dad could remember everyone's names.  We asked people to "sign in" as they came into his room.  There were his nurses:  Abby, Courtnay, Marlito, Amy, and Mike.  There was Dr. McNeer, Dr. Muller, Dr. Panigrahi, Dr. Haydon, Dr. Cunningham, and Dr. Cohn (of course).  There was another doc who ran out of business cards, so we'll catch his name next time.  And, we can't forget the entourage of Residents that visited Theo daily. There was also Bonny, Erin, Amy, Patty, Emily, Stacy--the  Comer team who will be helping us along the way. We got a lot of information, booklets, and binders on Neuroblastoma, treatment, cancer support groups, nutrition,  and the list goes on.  We stayed up til 4 am one night just organizing documents into three separate 3-inch binders. (Yes, they are color-coded for those of you who know about Eleni's OCD for organization).

It was pretty quiet at the hospital over the weekend...except when Eleni accidentally pressed the "911" button instead of the nurse call button. Dean and Eleni both were very impressed at how quickly all the doctors and nurses burst into Theo's room. We were told first-time families often make that mistake. Oh, and there was the time when Theo and the girls wanted to go visit the playroom. When they tried taking the elevator to the first floor, it literally "shut down".  You see, Theo was equipped with a tracking device on his ankle, and no one told them to stop at the desk to let them know Theo was leaving the floor. When security rushed in and wanted a full report of the "incident", they realized that we had made mistake #2.  :)

NO HOSPITAL COULD KEEP HIS FRIENDS AWAY

It was an emotional five days, as everyone can imagine. But, every time a visitor came to our door, Theofanis was the happiest kid in the world!  Father Andrew was more than a familiar face when he arrived on Saturday morning with good wishes, a blessing, and a couple cups of Dunkin' Donuts coffee. Starting with his sisters and two grandmothers, a lot of love and friendship poured into our room and over the phone and email.  Here are just a few to name...Mr. George (our pastoral assistant);  Alexandra (our cousin and pediatrician);  Presbytera Dimitra and Joanne with Anastasia, Katerina, Giorgio and Stefanie (and Demetra & Sophia who had a sleep over with them); George and Angie; Theia Georgia; Theio Kosta, Becky and Elizabeth. Oh, and we got a special visit from our new friend, Yano, his mom and grandma. Yano is a Neuroblastoma super-star and winner!  He is turning 5 next week and is now cancer free!

Theofanis started his "Beads of Courage" strand. This is a fantastic program for childhood cancer patients to record their experiences and express their feelings along their journey. Each bead represents a different experience. There are different colored beads for a hospital night stay, for surgery, for a "poke", etc. There are "bumpy" beads for tough days, "courage" beads when they felt they overcame fear. This truly is a wonderful program! Theofanis LOVES this. You can see that he's already very proud of his beads of courage.  

On Tuesday (day 5 of chemo), Theofanis got super excited when the doctors told us they were moving up his chemo treatment so that we could go home early!  So, for all of you who lovingly called us asking to still visit, we'd love to have you come down next time.  We'll be back at Comers on June 8th.

THE SPOT

Theofanis' First Round of Treatment was:

·         Chemo Day 1 @ 5:00 pm: Cytoxan and Topotecan.  1/2 hour infusion each.  Theofanis did great.

·         Chemo Day 2 @ 5:00 pm:  Cytoxan and Topotecan.  1/2 hour infusion each.  Theofanis did great.

·         Chemo Day 3 @ 5:00 pm:  Cytoxan and Topotecan.  1/2 hour infusion each.  Theofanis was sick. He got scared. We all got scared.

·         Chemo Day 4 @ 1:00 pm:  Cytoxan and Topotecan. 1/2 hour infusion each.  Theofanis held the plastic basin under his chin during most of the hour. He said, "I'm just practicing." Later, he was sick. We explained to him that his body is "getting the yuckies out." (Renee, thanks for letting me plagiarize).

·         Chemo Day 5 @ 9:00 am:  Cytoxan and Topotecan.  1/2 hour infusion each. Theofanis did great.

He was given quite a bit of anti-nausea medicine throughout the five days. He was given Zofran and Benadryl.  It knocked him out here and there.  He's also sweating a lot and it's causing a rash under his dressing for his central line. We need to find a better, less irritating adhesive.

Eleni and Kosta observed a lot, asked questions a lot, asked the same questions over and over, and tried their hardest to retain as much information on each of the meds, how to clean and flush his central line, what sanitary procedures must be followed, and what to look for on his monitor.  They're documenting everything, too.

They all left happily on Tuesday, but with nervousness on what's ahead.  They left with a stack of prescriptions,  several cans of Pediasure (because Theofanis' appetite was disappearing), and the emergency number to call in case Theo develops a fever of over 100.4 degrees F.  The one assurance Eleni and Dean had was that a home care nurse was arriving the next morning to teach them everything they need to know about taking care of their son at home.

Theo is resting at home, and he's full of energy.  He has gotten nauseaous again, but he's happy to sleep in his own bed.  He's eating a bit more and he even did all his homework! Maybe he can go back to school for a day here and there? Only his blood work will tell if and when it's ok.  He's getting his first set of labs taken on Thursday. Monitoring those WBC, RBC and Platelet levels has begun.  Watching and preparing for the ups and downs that come between treatments is critical. Let's pray that he's able to fight off any potential infections.

WITH LOVE AND PRAYER HE WILL WIN!

Let's talk about the power of a hug.  One of the nurses grabbed Eleni and gave her a hug, late one evening in Theo's room. Even though she said, "it's going to be ok," her hug was more assuring than her spoken words.  It's hard to misinterpret a hug because a hug can mean so much.  When a stranger meets you for the first time with a hug, it's a statement beyond "hello" or "nice to meet you", but instead it's a hope that "we can be friends."  When a man extends a hug to another, it means, "I am here for you."  When a husband and wife hug, it says, "we're in it together."  When a parent hugs their child, it means, "I will protect you." 

So for those days when you think you're struggling to find just the right words to say,  consider extending a simple hug to someone.  Hugs can be given at any time, and for any reason. They can be sent from afar as well by simply saying, "I'm sending you a hug." Kosta and Eleni want to thank all of you for every single hug you've given us and our family!

One last note...we got another sliver of good news from some preliminary tests from the bone marrow biopsy.  At first glance, there are no visible neuroblastoma cells in the bone marrow!  Remember, though, the year-long treatment plan for Stage IV High Risk NB doesn't change.  And, we're still waiting for more test results.  But any little pieces of good news will hopefully help our medical team place Theofanis' Neuroblastoma on the better end of the spectrum.  Continue to pray loud and strong for our little boy, because God is hearing all our prayers!  Thank you, Lord, for listening to our prayers for Theofanis!