Chemo Cycle #4 is No More!

Theofanis has done a pretty good job staying on schedule with his Chemo treatments. Despite the two bouts of neutropenia and several blood transfusions, his young body has been fighting hard to quickly recover after every chemo induction. So promptly, 21 days after the start of his last chemo session, he was scheduled to be admitted for Chemo Cycle Four.  Last week, accompanied by his parents and sisters, he went to the SPA (Special Procedures Area) for his pre-chemo physical and blood tests. His nurses were concerned that his platelet counts would not be high enough to start chemo, especially since he had low counts that attributed to his nose bleed the previous week.  But, he checked out ok, so he was checked in to Comer.  His fluids were started, he was transferred to his room, but chemo didn't start until hours later...he was dehydrated so they added a bolus to get his blood to the appropriate level for the chemo.

While the Yianas' waited, they spent some time in the playroom, unpacked for their stay, and they even decorated the window in Theo's room to reflect a "Sizzling Summer" scene. It was, by the way 100 degrees F outside and the heat index was a blistering 110 degrees F. By the way, Theo promptly contacted Child Life Services to ask to borrow the remote Wii system, which he now hopes to claim ownership of at every visit.

There was a heartbreaking event at the hospital that contributed to the minor delays of the day. The doctors, nurses, staff and patients of Comer Children's Hospital were mourning the loss of Dr. James Nachman, professor of oncology and world-reknowned expert in pediatric leukemia. A memorial service was being held that day for the Comer Medical family to honor their colleague who unexpectedly passed away. Dr. Nachman was one of Theofanis' oncologists who was by far, one of the sweetest, kindest, nicest people anyone can ever meet. Theofanis said Dr. Nachman was one of his favorites! He was a baseball fan, so when Theofanis was organizing his baseball cards, Dr. Nachman would spend time with Theo going through his collection. He told us stories of when he met Pope John Paul II (Dr. Nachman was Jewish, so the story was pretty funny!) He even picked up Theo in his arms, giving him a big hug to make him smile. Dr. Nachman was brilliant, made great strides in leukemia research, and helped many, many children battle and win their fight against cancer.  For days, Eleni and Kosta struggled with how to tell Theo that Dr. Nachman had died. Death is a topic that the Yianas' don't want to talk about or think about. They stressed over when and how to tell him. They sought advice from friends and doctors. But, the right time came unexpectedly as they were walking through the halls of the hospital and Theo saw a poster of Dr. Nachman, paying tribute to him.  Deme immediately read the poster.  Theo looked at his parents for an explanation.  Eleni and Dean knelt down and explained that Dr. Nachman now has a special place in heaven. God is taking good care of Dr. Nachman since he took such good care of so many children with cancer.  Deme then asked if Dr. Nachman believed in God. When they heard "yes," all three kids immediately felt better.

THE SPOT

The chemotherapy regimen this time was dissimilar to his previous cycles.  Theo was given three different types of chemo drugs, and all were given in various lengths of time. As always, these medicines are administered intravenously  through his central line. Vincristine was a quick injection.  He was also given Cytoxan again, however, this time he was given a stronger dose which had to be administered over six hours.  His third drug, Doxorubicin, was administered over a 24-hour period.  Once the first bag was complete, his second bag was hung, and so on. 

His chemotherapy schedule for Cycle Four was as follows:

• Chemo Day 1 @ 9:00 pm:  Vincristine (quick injection), Cytoxan (6 hour infusion),  Doxorubicin (24 hour infusion)
• Chemo Day 2 @ 9:00 pm:  Vincristine (quick injection), Cytoxan (6 hour infusion),  Doxorubicin (24 hour infusion)
• Chemo Day 3 @ 9:00 pm: Vincristine (quick injection), Doxorubicin (24 hour infusion)

These three medicines and the constant flow of the chemo through his veins zapped a lot of Theofanis' energy.  He was tired and weaker than during previous rounds. The medications' immediate side effects included nausea, which caused Theo to lose his appetite.  His sense of smell and taste has changed, also.  And if you all recall, Theo has an extreme dislike of hospital food. So when Eleni and Kosta put food (brought from home) on his plate (brought from home), his tummy started rumbling and he immediately did not feel well.  He was a trooper, though, and really did try his best to eat.  He would have a bite here and there and he would try the protein shakes, grimmacing after every sip.

What made him happy and perk up though, despite the lethargy,  were the visits by those who love him...in person and via FaceTime. Theofanis received a FaceTime phone call on Friday from Theio George and Theia Angie (Sophia's Godparents) who, along with their children Filia and Anthony, were entertaining Demetra and Sophia for the day.  On Saturday, he had some extra special visitors from his beloved school, Pythagoras. He had a lot of fun visiting with Miss Jenny, his Greek dance teacher who walked in with gifts and cupcakes for all. And, Miss Evelyn (Sophia's preschool teacher) came by to play several rounds of UNO and make Theo and his sisters laugh.  On Sunday, Theia Tess came by to say hello in the afternoon with a Hexbug toy that Theo had hoped to scare the nurses with.  (It didnt' work, because Marlito wasn't the kind of nurse who gets easily scared.) And an improptu visit from his best buddy Pantelis and his mom Kimberly reenergized Theofanis so much that he ate his entire dinner!  Theo brightens up every time Pantelis walks into that hospital room.  It's precious to see the purity in their friendship!  And, visitors continued to come as Theia Maria and Theio Greg (Demetra's Godparents) came in and stayed until Theo was done with his chemo at 9:30 pm.  They brought with them a very cool Legos set, which would keep Theo busy for several hours.  But, there was no time to even open the box because the doctors said it was ok to go home as soon as he was disconnected from the IV and monitor. So, at around 10 pm, the discharge papers arrived, and the entire Yianas family quickly packed up and went home together!  The 72 hours of continuous chemo was over.

WITH LOVE FAITH AND PRAYER, HE WILL WIN

New battles are created each day. Whether it's getting through the day without nausea, eating a little more than the previous day, fighting off a fever or infection, or holding back the tears that flow at a second's notice, Theofanis has become a warrior.  He is a warrior without anger. He is a warrior who knows what must be done to win. He is a warrior with God on his side. Every day Eleni and Kosta are comforted by knowing that God is on his side. Just like when the kids were comforted by the fact that Dr. Nachman believed in God, the Yianas' trust in God brings them continued strength with each passing day. It is one day at at time, one prayer at at a time, but the power of prayer is immense and will loom large over their continued fight against this cancer.

This weekend, the Yianas family will be attending the Children's Neuroblastoma Cancer Foundation's Annual Parent and Medical Education Conference in Schaumburg, IL. CNCF is a national organization that is the premier source for neuroblastoma information and resources. Comprised of families affected by Neuroblastoma, they are committed to finding a cure for neuroblastoma through research, education, awareness and advocacy. ( http://www.cncfhope.org/ ) At this conference, parents are introduced to researchers who are developing new treatments and therapies to improve survival rates and reduce the long-term effects of treatment. Theofanis' oncologist, Dr. Susan Cohn, will be speaking at this event along with many of her reknowned colleagues from around the country. The Yianas' will meet other families who are fighting the same fight, hold the same fears, and seek the same cure. This conference is also focused on the children...those fighting for their lives, those who are cancer survivors, the siblings, and those children who are now angels. The conference has events planned for the kids. And when we asked Dr. Cohn if she thought that Theofanis would be ok to attend the conference, she said that as long as his counts are ok, its great for kids with neuroblastoma to meet and play together. Eleni and Kosta agree that it's time for Theofanis to meet other kids who understand what he's going through because they are living it, also. (Demetra and Sophia, too, of course.) And with this year's conference being held a mere 10 minutes from home, the Yianas' feel that their attendance is meant to be.

Theofanis' blood test today came back looking ok. Just ok. So, please pray that he is able to go to the CNCF conference and that his body is able to ward off any bugs that may threaten him.  And, please say a prayer for all the brave warriors and their families who are fighting Neuroblastoma and other childhood cancers.

Our continuing thanks and heartfelt regards go out to all of you who have bestowed on us your love, encouragement, hopes and prayers for the health and cure of our Theofanis. - Eleni and Kosta